The HFEA guide - Human Fertilisation and Embryology Authority

The HFEA guide to Infertility | 2007/08Fertility mattersIT TAKES JUST ONE SPERM AND ONE EGG TO CREATE A NEW LIFE, BUT THERE’SMORE TO FERTILITY THAN THAT. WE LOOK AT THE MIRACLE OF MAKING BABIESBefore we start to look at infertility, it helps ifyou know something about fertility - what itmeans, how it works and how babies arecreated. The exact moment of fertilisation iswhen a woman’s egg and a man’s sperm fuseto form a single cell. But for this to happensuccessfully, certain things must be in place.Your hormones, which are your body’s chemicalmessengers, must be balanced and the bodilysystems that produce eggs and sperm mustbe working at optimum levels. In addition,intercourse must take place around the time ofovulation when an egg has been released fromthe ovary.Eggs and spermFOR WOMENWe are all born with a certainnumber of eggs, but you have to waituntil puberty before the hormonesthat kick-start your menstrual cycleand ovulation come into play.Successful egg production dependson the interaction of several differenthormones. Part of the brain knownas the hypothalamus starts off theprocess by producinggonadotrophin-releasing hormone(GnRH) which stimulates the smallgland at the base of your brain, thepituitary, to release follicle-stimulatinghormone (FSH). This in turn triggersthe follicles, or egg sacs, to startdeveloping in the ovaries.These follicles produce oestrogenwhich stimulates the pituitary gland toproduce another hormone calledluteinising hormone (LH), the magicbody chemical that triggers ovulationonce a month until you reach themenopause. The exact time of themonth for ovulation depends on yourown individual cycle, which in anaverage 28-day cycle will be arounddays 12-15, day one being the firstday of your period.At ovulation, the ripest egg sac burststo release an egg, which starts totravel down the fallopian tube where itmay meet a sperm depending onwhether you have had intercoursewithin the last four days. Eggs liveand can be fertilised for 12-24 hoursafter being released and sperm canstay alive and active in your body for12-48 hours, so you don’t have tohave intercourse at the exact momentof ovulation to get pregnant.After ovulation, the remains of theegg sac form a small yellow bodycalled the corpus luteum, which thenstarts producing the hormoneprogesterone whose job is toincrease the blood supply to thelining of your womb, making it theperfect environment for a fertilisedegg. It takes around five days for thefertilised egg to reach the womb andby the time it embeds itself in thewomb lining, it will be made up ofaround 150 cells.If the egg isn’t fertilised, or is fertilisedbut doesn’t attach itself to the liningof the womb, it starts to break down,the corpus luteum shrinks andprogesterone levels plummet. As aresult, the blood vessels in the womblining break up, the walls of thewomb contract and you have aperiod, which is in fact the lining ofyour womb (known as theendometrium) being shed.FOR MENAs you reach puberty, the samehormones that control ovulation inwomen stimulate the release oftestosterone, which is responsiblefor producing sperm.Gonadotrophin-releasing hormone,or GnRH, produced by thehypothalamus in the brain, triggersthe release of follicle-stimulatinghormone (FSH) and luteinisinghormone (LH) from the pituitary gland.FSH stimulates sperm production inthe testicles while LH stimulates thetesticles to produce testosterone.From the testicles, sperm travel tothe epididymis, a 40ft coiled tube,where they mature, which takesbetween nine and ten weeks. Theythen travel down another tube, thevas deferens, to the penis ready fortheir next journey.At the point of ejaculation duringintercourse, your penis releases asmany as 300 million sperm intoyour partner’s vagina but only a fewsurvive the hazardous journey throughthe neck of the womb (cervix), uterusand fallopian tubes. And ultimatelyonly one will burrow its way intoan egg.4 | For further information visit www.hfea.gov.uk

The HFEA guide to Infertility | 2007/08Is there a problem?STARTING A FAMILY IS NOT ALWAYS AS SIMPLE AS YOU THINK. READ ON TOFIND OUT WHAT COULD BE STOPPING YOUGetting pregnant can be harder than youthink. If you are having intercourse regularlywithout using contraception you shouldconceive within two years, but in any onemonth your chances of conception are onlyaround 20 to 30 per cent.But first some reassurance – if you are havingproblems conceiving, there is plenty of helpavailable to you, to identify possible causes andhow to treat them. You are not alone; aroundone in seven couples has difficulty.Infertility is often thought of as a femaleconcern, but in fact in nearly a third of cases(32 per cent) it is because of male problems,such as a low sperm count. Conditions affectingthe woman’s fertility can include damage to thefallopian tubes (16.7 per cent of cases),ovulatory problems (4.9 per cent), endometriosis(3 per cent) and conditions affecting the uterus(0.3 per cent). Sometimes it can be acombination of factors that account for infertility(17 per cent of cases) and sometimes there issimply no identifiable reason (18.7 per cent).Did you know?In every 100 couples:20 will have conceivedwithin one month;75 will have conceivedwithin six months;90 will have conceivedwithin a year and95 will have conceivedwithin two years.What can go wrong?FOR MENSometimes a man does not produceenough sperm (known as a lowsperm count), or the sperm are not ofa sufficiently high quality to fertilisethe egg. It is also possible that thereare problems with the tubes thatcarry sperm. If a man finds it difficultto get an erection, or has troubleejaculating, sperm may not reach hispartner’s vagina.FOR WOMENSometimes a woman’s ovaries do notrelease eggs, or the fallopian tubescan be blocked or damaged, whichmeans that eggs are not carried fromthe ovaries to the womb. This canalso prevent a fertilised egg fromreaching the womb, or preventsperm from reaching and fertilisingone of the eggs.There can also be problems with thewomb lining, which mean that afertilised egg is prevented fromimplanting successfully. There may notbe enough lubricating mucus from theneck of the womb, the consistencyof the mucus could be too thick or itcould affect the ability of the sperm toswim towards an egg.6 | For further information visit www.hfea.gov.uk

The HFEA guide to Infertility | 2007/08Counting the costWHEN ALL YOU WANT IS A BABY NO PRICE CAN SEEM TOO HIGH, BUT BEFORESTARTING TREATMENT YOU DO NEED TO THINK ABOUT THE FINANCIAL SIDEYou can either have NHS-funded treatment or go privately.The treatment won’t necessarily be any better in the privatesector, but you can probably start treatment more quickly,although there may still be waiting lists for treatments suchas egg donation.NHS-fundedtreatmentProvision of NHS-funded treatment canstill vary across the UK but the NHS aimsto offer women between the ages of 23and 39 at least one free cycle of IVF,assuming you meet the eligibility criteria.Some criteria are set out in the NationalInstitute for Clinical Excellence (NICE)fertility guideline (see www.nice.org.uk)and others are determined locally, suchas the treatment of couples where onepartner already has a child. The NICEguideline applies to England and Walesonly - Scotland and Northern Irelandhave different criteria. For the most up todate information, talk to your GP.NHS treatment may be available at yourlocal hospital or a private clinic if yourPrimary Care Trust or Health Board hasa contract with them. Waiting lists vary.Unless you are exempt, you will have topay prescription charges for drugs.Possible restrictionsIf initial tests show up no identifiablecause for your infertility you may beoffered tests and other treatments,such as fertility drugs and intrauterineinsemination, before being offered IVF.Women must be under 40 and, afterclinical assessment, be thought tohave a good chance of respondingpositively to treatment. For example,they should not be coming up to themenopause.There may be criteria relating toexisting children.The Choice of Referral scheme,which came into effect from1 January 2006, gives most patientssome choice of where they are seenwhen they are first referred by theirGP for an outpatient appointment.This will include couples who arebeing referred to a specialist for teststo determine the cause of infertility.However, patients’ right to chooseunder the scheme does not extendbeyond the first outpatient referral.Are youeligible?To find out if you are eligible forNHS funding, the first person tospeak to is your GP, as you willusually need a referral from them.Alternatively, you can contact yourPrimary Care Trust (England), LocalHealth Board (Wales), Health Board(Scotland) or Health and SocialServices Board (Northern Ireland)direct, and ask for details about theirfunding policy, and who is eligible.Going privateIn theory, anyone with the means canhave private treatment, but individualclinics still have rules about whom theywill and won’t treat. We recommend youask the clinic about their eligibility criteriaearly on.So what’s involved if you go privately?You pay for your drugs and treatment ata private unit of your choice and you getto choose your consultant. Treatmentprices can vary widely from clinic to clinicdepending on what tests and treatmentyou are offered. Treatment costs alsovary significantly according to anindividual’s medical circumstances. Asingle attempt at donor insemination cantypically cost between £500 and £1000.A cycle of IVF, including drugs andconsultations, can typically cost between£4,000 and £8,000. This will depend onwhere you live and the clinic you choosethough the final cost may be more or lessthan this. If you need ICSI or donor eggsor sperm then your treatment will usuallycost more than standard IVF.That said, private clinics are in competitionwith each other and prices tend to befairly similar. The drugs used for IVF areexpensive, so check if they are includedin the overall price. If they aren’t, it’sworth comparing prices from differentsources such as your clinic’s dispensaryand local pharmacies, as prices can vary.Sometimes they may be available directfrom the pharmaceutical company.Some fertility clinics offer egg-sharingschemes in which women can donateeggs collected from a cycle of IVF toanother woman in return for a reducedprice IVF treatment. They will still have topay for any extra treatment needed.Both NHS and private clinics pay a feetowards the costs of being regulatedby the HFEA. Regulation is needed toensure the clinics comply with the lawand that practice is safe and appropriate.The fee paid by clinics to the HFEA isbased on the number of IVF and donorinsemination treatments they carry out.We charge the clinic directly and someinclude this in their overall fee topatients, as they do for the other costsof running a clinic. Some clinics,however, may pass this cost directly onto you as an additional cost: £104.50 foreach IVF cycle or £52 for each donorinsemination cycle. Do check with yourclinic what their practice is.For more information visitwww.hfea.gov.uk/ForPatients10 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityHow it adds upCosts typically cover:First and follow-up consultationappointments for a couple.Simple tests such as hormone tests,ultrasound scans and sperm tests.Special tests such ashysterosalpingogram (fallopian tubesx-ray), ultrasound tracking of eggdevelopment, trial embryo transferand genetic tests.Assisted conception treatments,including intrauterine insemination,donor insemination, IVF, ICSI,egg or sperm donation or frozenembryo donation.Freezing and storage of spermand embryos.Our story: We were treated on the NHSSara, 34, a civilian in the police force,has polycystic ovary syndrome(PCOS) and her husband Kevin, 40,a police officer, has a variable spermcount. After treatment the couple,who live in the Midlands, areexpecting their first baby. Sara tellstheir story:Treatment time‘We were treated on the NHS and onlyhad to pay an extra £270 to have ourembryos frozen. We had no problemsgetting NHS treatment as I’m under 38and have no children. We couldn’t havehad treatment if we had not been eligiblebecause we were not prepared tobankrupt ourselves for a baby. I tookfertility drugs and was offered severalother treatments before being offeredIVF. Our first two attempts failed but onthe third attempt we used ICSI as welland I conceived.’Feelings‘We’ve been open right from the startand friends and family have been verysupportive. Several couples at workhave approached us for help and advice.You feel different but we have joined asupport group which has helped.’Our relationship‘On the whole it hasn’t affected ourrelationship. As we have been so openwith everyone else we don’t feel we haveto talk about it with each other all thetime and so far we have been alright.’Our tipsFind out what you can about youroptions. We knew little when westarted and sometimes I feel we don’tknow very much as there are alwaysnew things coming out. I have tried tolook up things but until you are lyingthere you don’t know what’s going tohappen or how it will affect you.Keep a sense of perspective. At theend of the day it’s not the end of theworld if it doesn’t work.Get support. There’s nothing to beashamed of. Just because you can’tconceive you are not a freak.Our story: There are long waiting lists in our areaHelena, 34, a business managementconsultant, and her husband Ian, 34,a surveyor, had private fertilitytreatment. They live in London andnow have a daughter, Sienna, who isa year old. Helena tells their story:Treatment time‘There are long waiting lists for fertilitytreatment in our area and we didn’t meetthe criteria so we chose a private clinic.After monitoring three cycles, which cost£1,200, we were offered IVF. While wewere waiting I conceived naturally butmiscarried. We then tried again, whichcost £3,000, but our eggs and sperm didnot fertilise. Then we tried IVF with ICSItwice costing £9,000. On the secondattempt I conceived.’Feelings‘I felt incredibly optimistic, although theworst time was after the miscarriage.The clinic gave me a huge amount ofconfidence and each time we started anew treatment cycle we felt goodbecause we were doing something.Friends and family were really supportivebut devastated when it didn’t work.’Our relationship‘Working through the many differenttreatments together and all the ups anddowns that came with them brought uscloser as a couple.’Our tipsChoose your clinic carefully. It’s vitalthat the ‘fit’ between you and yourclinic feels right. We looked at a couplebefore settling on the one we went to.Take care of yourself. I decided Iwould try some anti-stress therapiesincluding acupuncture.A positive pregnancy test doesn’tmean you will have a baby. Becauseof my miscarriage I felt really stressedout for the first 12 weeks of mypregnancy half expecting it to besnatched away again.It’s okay to have a bad day. Yourbaby is no different to any other sodon’t feel guilty if you feel tired andexasperated with your crying baby.For further information visit www.hfea.gov.uk | 11

The HFEA guide to Infertility | 2007/08Call the clinicWITH SO MANY ASSISTED CONCEPTION CLINICS, YOU MAY HAVETO SHOP AROUND BEFORE FINDING THE RIGHT ONE FOR YOUThere are about 128 HFEA-licensed clinicsin the UK so it’s not surprising you may findthe choice overwhelming. It’s worthspending some time exploring all youroptions so that when you do make yourfinal decision you feel comfortable with it.A good starting place is to find out if you areeligible for NHS treatment, or whether you willhave to go privately (see page 10), as this mayaffect your choice of clinic – around a quarterof clinics take private patients only.If you are having NHS-funded treatment,find out if you can have a say in the choiceof clinic (some private clinics take NHS patientsif there is a suitable contract with the relevanthealth authority). If not, ask your GP why youhave been referred to a certain clinic and alsoif there will be any costs to you (see page 10for more about costs and page 42 for a listof clinics).You can use the HFEA website’s interactiveclinic search facility (see HFEA ‘Find a clinic’,opposite) to draw up a shortlist of possibleclinics who you can then contact. This will helpyou to compare what each one offers,including prices if you are going privately. Youmight then want to arrange to visit a few soyou can get a feel for the place.Making a final decision can be exhausting andconfusing, so here are a few pointers to helpyou on your way.Location, location,locationThe first thing to consider is where theclinic is. Getting up in the middle of thenight and trekking half way across thecountry to have eggs collected or to givea sperm sample can be stressful, whichis exactly what you don’t want at thisalready anxious time. Taking time offfrom work for consultations andtreatment may also be tricky. So it maybe worth choosing a clinic that’s withineasy travelling distance.If you do opt for a clinic that is furtheraway you may be able to have certaintreatments carried out at a local hospital(referred to as a satellite or transportcentre).Think aboutHow far away is the clinic from homeor work?How easy is it to get to?Is there public transport or a car park?Are there any treatment arrangementswith a more local hospital?First appearancesDo your homework and find out as muchas you can about the clinic. Some mayhave special interests and expertise inspecific treatments.You may feel drawn to olderestablishments with a tried and testedreputation, but don’t dismiss new clinics,which may offer equally high standards oftreatment.When making initial enquiries take intoaccount the attitude of the person at theother end of the phone. For example,are they sympathetic to your questions?It is very important that you are made tofeel involved in the decision makingrather than just feeling as if you are on aconveyor belt.Of course you may have doubts as towhether you are making the right choice.One of the best ways to allay them is bytalking to other patients. No one canpossibly say that such and such a clinic isthe best one for you but they can sharetheir personal experiences (see page 44).Think aboutWill you see the same doctor ornurse every time?Can you choose between a male anda female doctor and nurse?What provisions are there for theprotection of your privacy and dignityin the clinic?Do the staff sound welcoming andproud of their work?Can the clinic put you in touch withother patients?Support linesRest assured, all clinics offering IVF andother treatments will give you the chanceto talk over your treatment and anyworries you may have with a counsellor.There are usually several different typesof counselling available (see page 14).Think aboutWhat types of counselling or supportgroups does the clinic offer?Are these services free or will we haveto pay extra?Does the clinic offer patientsupport groups?12 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityRules andregulationsDoes the clinic have any selection criteriafor patients? For example, do they onlytake couples under a certain age, andare single women and same sex coupleswelcome? And maybe it has acancellation policy if too many or too feweggs are produced as a result of takingfertility drugs as well as time restrictionson different treatments.Think aboutThe length of the waiting time.Any restrictions such as age or sexualorientation.How many cycles of treatment areallowed before trying another orstopping treatment all together.Success rateThere’s not a clinic in the world that canpromise you will go home with a babybut it is important not to choose a clinicjust because its success rate looks goodon paper. Success rates, or live birthrates as they are called, are incrediblydifficult to interpret. For example, a clinicthat accepts only younger couples withstraightforward infertility issues will usuallyhave better success rates than a clinicthat takes older couples or couples whoneed more complicated treatment. It’salso worth looking at the clinic’s multiplebirth rate. A high multiple birth rate mayaccount for a clinic’s high live birth rate -but multiple births carry a greater risk toboth mother and babies. See the HFEA‘Find a clinic’ search, below, to help youevaluate the success rate of a clinic.Think aboutThe live birth rate for the type oftreatment you are having.The life birth rate for your particularage group.Embryo transferpolicyClinics can replace two embryos ateach IVF attempt, or three if you areaged 40 or over (and using your owneggs). Replacing more would increaseyour chance of having a multiplepregnancy, with its associated healthrisks. Some doctors prefer to replaceone embryo to reduce this risk, andfreeze any remaining embryos to beused in the future, if the treatment isunsuccessful.Think aboutWhat is the rate of multiple birthsfor the clinic, and how do you feelabout this?What are the clinic’s criteria forfreezing embryos?YOU ASK…What kind of questionswill the clinic ask about mycircumstances?By law, before you start treatment,your clinic must consider both yourpotential baby’s welfare (including“the need for a father” specificallymentioned in the 1990 HumanFertilisation and Embryology Act) andhow the birth may affect any otherchildren you may have. Theassessment is designed to foresee anycircumstances in which your potentialbaby might experience serious harm.The clinic will ask you some questionsabout your medical and social history,for example, whether you have hadany contact with social services overthe care of any children you mayalready have. Cases in which seriousharm is likely are very rare, so mostpeople can start treatment withoutdelay. Occasionally, with your consent,a clinic may want to make furtherenquiries to relevant individuals oragencies such as a GP or socialservices. Policies about treating singlewomen, same sex couples and olderwomen vary from clinic to clinic. Clinicswill often apply an upper age limit forthe women they will treat, althoughnone is set by the HFEA or the law.The HFEA has recently revised itsguidelines to clinics on this issue.For more information, seewww.hfea.gov.uk/ForPatientsHFEA ‘Find a clinic’ searchA good way to find a list of licensed clinics in your area with details of their services and success rates is to use the ‘Find a clinic’search on the HFEA website (www.hfea.gov.uk)Here’s how it works:1Start2Theby entering your postcode orregion, your age band, type oftreatment you are considering (if youknow it) and whether you are anNHS or private patient. If you don’tknow yet, you can enter both.locator will bring up a list ofclinics that meet your criteria, soyou can see how many people in3Toyour age group have received thattreatment and for how many it hasbeen successful. The number oftreatments carried out can be agood indicator of the level ofexperience of the clinic.find out more about the clinic,click on the most recent HFEAinspection report. Inspections arecarried out at regular intervals andthe reports will give you the mostup to date information.For further information visit www.hfea.gov.uk | 13

The HFEA guide to Infertility | 2007/08Talking it overTHE GOING CAN BE TOUGH, BUT THERE IS SOMEONE AT EVERY STAGE TO HELPWe all have times when we need someone to talk towho will really listen. You and your partner may befinding it hard to deal with your diagnosis of infertility,feeling unsure about what all the language and jargonmean, or wondering how you will ever cope with allthe tests and treatment. This is where a counsellorcan help.Friends and family may be supportive, but it is oftenuseful to talk about your feelings with someone whodoesn’t know you and who will not judge what you sayor are feeling from a subjective point of view. Counsellingcan help you explore your feelings, become clearerabout your situation and find new ways of coping.Considering theimplicationsAll HFEA-licensed clinics have to offeraccess to implications counsellingbefore you consent to treatment. Thisinvolves a counsellor talking to youabout the treatment you are having orplan to have, so that you understandexactly what it involves and how it mightaffect you and those close to you - nowand in the future.This is especially important if you areconsidering treatment with donatedsperm, eggs or embryos or surrogacyarrangements - all of which involvecomplicated issues. You will need time toexplore how you feel, to adjust to thisdifferent way of planning a family, toconsider the legal implications and decideif this is going to be the right decision foryou. Spending time with a counsellor canhelp with this and enable you to feelbetter prepared for parenthood throughdonation or surrogacy.Facing up tofeelingsIf you need emotional support before,during or after fertility treatment,support counselling is available atmany clinics. You can ask for writteninformation and if you need additionalsupport, your clinic will have informationabout other services in your area.This form of counselling is especiallyuseful in helping you to work through theemotions you may experience at specifictimes during treatment, such as when youfirst find out you have fertility problems,when you are waiting for results, if you arefaced with a negative outcome, or if youare both having to come to terms with thefact that there is no further suitabletreatment for you to try.Dealing withthe pastInfertility can throw up all sorts of issues.For example, it can sometimes triggerpainful memories from your past or thetreatment may be making you depressedor anxious. Therapeutic counsellingshows you how to work through some ofthese difficult issues to great effect. It canreally help you to deal with the impactthat infertility may be having on your lifeand your relationships with other people.Ask the doctor or specialist fertility nursefor information. If it is not available at yourclinic, they can refer you to anindependent counsellor elsewhere.Making contactYour clinic should provide you with thecontact details of a counsellor. Differentclinics have different costing policies, socheck whether you have to pay extra forcounselling. You may choose to havejust one or two sessions or more, asand when you feel you need them.They usually last for an hour and youcan expect to see the same counselloreach session.If for any reason you don’t feel happy orcomfortable with your counsellor, talk tothem about what’s worrying you. If youfeel you still can’t communicate, ask tobe referred to another counsellor.WHAT COUNSELLINGCAN GIVE YOU...1The2The3Help4Support5Theopportunity to talk freely andopenly without being judged.chance to explore feelings andsensitive issues that are troubling you.in understanding the factorsthat may be contributing to yourdifficulties.in finding your own solutionsand new ways of coping.knowledge that what you sharewith your counsellor will be treatedas confidential unless there areexceptional circumstances.For information on counsellingorganisations and other forms ofpatient support, see page 44.14 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityYOU ASK…Since we started trying for ababy, sex has become muchless fun. What can we do?Couples with fertility issues often findtheir love life suffers. Intercoursebecomes much more about makinga baby rather than about fun andshowing your feelings for each other.If you feel this is affecting yourrelationship a skilled counsellor canhelp you to explore the difficultiesas well as working with you toresolve them.My friend has just had a babyand I can’t bring myself to tellher that we are finding it hard tostart a family. What can I say?Deciding whether and what to tellfamily and friends can be hard. Youneed to think about who you aregoing to tell and what you are goingto say. If you do decide to confide insomeone it may help to explain tothem exactly how they can supportyou. You may want to talk thisthrough with your counsellor toconsider all the possible issues.The expert says...‘We’re based in the IVF Unit and see over300 people a year for counselling. Somecome for just one or two sessions whileothers need many more. They may wantto come on their own or as a couple.‘Some of our work involves helpingpeople to talk about their experiencesand to understand the underlying issueswhich makes it easier for them to findways to cope or sort out problems.‘It’s not surprising that infertility affectsthe rest of people’s lives. It’s pretty hardto face friends with children, or to dealwith talk at work about families or withsomeone going on maternity leave.Within a relationship, too, infertility cancause a huge amount of stress.‘We offer people a safe space wherethey can focus on their problems and besupported in finding their own solutions.Often, just sharing feelings with someoneoutside their circle of friends andrelations brings a sense of relief.‘There are certain key times whichcan be particularly difficult. At the startof a first treatment cycle, people areoften anxious and uncertain aboutwhat to expect.‘During treatment they often sayit is an emotional rollercoaster as theywait and see if they produce enougheggs, if they fertilise, and how manyembryos are created. If people havehad any problems with any of theseissues in a previous treatment it will beespecially stressful.‘Then, after the embryos aretransferred there is the long, anxious waitfor results. The day of the pregnancy testis usually very tense.‘Many of our patients see counsellingas a useful way of preparing fortreatment – as an extra source ofsupport and stress management duringit. It can be especially important forthose faced with a negative pregnancytest or if there are problems with thepregnancy itself.‘A skilled counsellor can play a vitalrole in enabling couples to deal withthe emotional challenges of thesedifficult experiences.’Jennifer HuntSenior Infertility CounsellorHammersmith HospitalOur story: Ask about support or counselling optionsonto IVF on the recommendation of ourconsultant and on the fourth attempt Iconceived Adelaide.’worked through it giving each othersupport. In many ways it brought uscloser together.’Caroline, 35, and her husbandAndrew, 36, a farmer, live nearSevenoaks, and have unexplainedinfertility. Their daughter, Adelaide,who is now four, was born after IVF.Caroline tells their story:Treatment time‘I was on Clomid for six months andthen had three attempts at IUI, none ofwhich was successful. We then wentFeelings‘To start with we felt a bit unsure and theidea of having to have IVF took gettingused to. We were hit quite hardemotionally. I thought it was going towork first time so it was a shock when itdidn’t. Those friends and family we didtell were extremely supportive. Howeverwe didn’t tell a lot of people because wefelt it was quite private.’Our relationship‘When you are trying for a baby it takesall the spontaneity out of sex so it isquite a strain. We would get quiteexcited when having the embryosreplaced and then feel utterlydespondent when it didn’t work. But weOur tipsAsk at your clinic about support orcounselling options. Support isabsolutely vital because infertilitytreatment can be such a solitaryexperience. No one in the waitingroom ever talks to each other.Set up a group if there isn’t one. Theconsultant set up a first meeting of asupport group and invited us along.After that a group of us carried onorganising monthly meetings. It wasinvaluable to get together and chatwith like-minded people who weregoing through the same thing. Wemade some very good friendsthrough it who we still have today.For further information visit www.hfea.gov.uk | 15

The HFEA guide to Infertility | 2007/08At the clinicWHEN AT LAST YOU GET TO THE CLINIC, THE CHOICE OF TREATMENTS ONOFFER CAN BE BEWILDERING. MOST PEOPLE HAVE HEARD OF IVF, BUT THEREARE OTHER TREATMENTS TOO. THIS SECTION WILL TELL YOU MORE ABOUTTHEM, WHAT THEY INVOLVE AND WHETHER THEY COULD BE FOR YOUMany people tell us that they feel a bit sweptalong by the process when they go to a clinic.It’s important to feel that you are getting themost out of your consultations, and feelcomfortable asking questions, or taking timeout to think things through. There can be a lotof difficult issues to consider, as this sectionwill show: decisions such as what to do withembryos not used for your treatment, or howto tell your child that they were conceivedusing donated eggs or sperm. Do rememberthat the clinic staff are there to help you makethe right choice for you.Even with understanding family and friends, youcan feel isolated while you are having fertilitytreatment. That’s why, throughout this section,we’ve asked people to share their experience oftreatment with you and to offer advice on whatthey learnt.As well as thinking about treatment and thesurrounding issues, you’ll also find there’s quitea lot of paperwork involved. This is because theclinic needs to make sure that you understand,and agree to, all that is involved in havingtreatment (see opposite).Every patient longs for the moment when apregnancy is confirmed. But some people findthey have been so focused on treatment thatthey don’t feel prepared for the actual pregnancy.There’s more information on what to expect inthis section.Sadly, although treatment is becoming moresuccessful, this is not everyone’s experience.This section also looks at what to do if yourtreatment has not worked.Finally, whatever the outcome of your treatment,we hope that you feel that your clinic has lookedafter you well throughout, both physically andemotionally. But if you are unhappy with yourclinic, this section will provide suggestions forhow to make a complaint.16 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityGiving yourconsentAs with most medical procedures,you and your partner, if you haveone, will have to give your consentto treatment.You may wonder why there can be somany forms to fill in before treatment caneven start but this is necessary to protectyou and any child you may have. Fertilitytreatment is still relatively new and thereare many ethical issues to consider.The HFEA provides clinics with consentforms for different treatment options andyou and your partner will have to sign theones relevant to your circumstances. Foryour consent to stand, it must be writtenand it must be current (ie. you have notsubsequently withdrawn it).It is important that you fully understandthe implications of the treatment to whichyou are giving your consent. Your clinicwill offer you the opportunity to haveprofessional counselling, which manypeople find helpful. Your clinic must alsoprovide information about the proceduresand processes involved in your treatment.There is no hurry, so do ask questionsand make sure you understand this andtake your time to reflect on it before yousign anything.There are three different typesof consent:1. CONSENT TO:Your fertility treatmentBasically this is no different to theform you have to sign for many othermedical treatments. For example, if youare having IVF you will have to consentto egg retrieval and the transfer ofembryos into your womb. Similarly,you will have to give consent if yourtreatment involves donated eggs,sperm or embryo transfer (see 3).2. CONSENT TO:Disclosure of informationYour clinic is not allowed to tell your GPor anyone else about your treatmentunless they have your consent to do so.It is up to you to decide what informationyou allow to be disclosed and to whom.3. CONSENT TO:The use and storage of eggs,sperm and /or any embryosproduced from themThe use could be for your owntreatment, for the treatment of othersif you are donating sperm, eggs orembryos, or for research. Storagerelates to the freezing of sperm, eggsor embryos for future use.As long as your eggs, sperm or embryoshave not already been used in treatmentor research, you can change or withdrawyour consent by getting in touch with theclinic where they are being stored. Yourpartner or, if a donor was used, then thedonor, may also change or withdrawconsent at any time until the eggs,sperm or embryos have been used intreatment. If consent is withdrawn byeither party or a donor, the eggs, spermor embryos may not be kept in storageor used in treatment.You must also state what you would liketo happen to these eggs, sperm orembryos if you were to die or becomementally incapacitated and thereforeincapable of changing or withdrawingyour consent.It is important to keep in touch with yourclinic. They will contact you six monthsbefore any eggs, sperm or embryosreach the end of their storage period, soit is vital that you let them know if yourcontact details change. If your storageperiod limit is up, the clinic is obliged bylaw to allow any eggs, sperm orembryos to perish, even if they have notbeen able to trace you first. If they donot comply with this, they risk losingtheir HFEA licence.YOU ASK…Can a man be registered as thefather of a child conceived afterhis death?Although rare, there are situations when awoman may want to have a child with herhusband or partner, which is conceivedafter his death. For example, he may havehad sperm stored prior to cancertreatment. A man can be recorded as thefather of a child resulting from fertilitytreatment carried out after his death, aslong as his consent is there in writing.Licence to…Fertility treatment is strictly regulated bylaw to protect you and your family. Underthe Human Fertilisation and EmbryologyAct 1990, any treatment which involvesmixing sperm and eggs outside the body,or using eggs, sperm or embryos, has tohave an HFEA licence.It is illegal to create an embryo outsidethe body or to keep or use an embryowithout an HFEA licence.In practice, this means that clinics needan HFEA licence to provide:in vitro fertilisation (IVF)donor insemination (DI)intra-cytoplasmic sperm injection(ICSI)intrauterine insemination (IUI) withpartner and donor spermgamete intra-fallopian transfer (GIFT)with donor/partner sperm and eggsany treatment using donated eggs,sperm or embryossperm, egg and embryo freezingand storagepre-implantation geneticdiagnosis (PGD)pre-implantation genetic screeningfor aneuploidy (PGS)Clinics carrying out the above treatmentsare regularly inspected by the HFEA. Tofind out more about the HFEA, how weregulate fertility treatment in the UK, andhow you can provide feedback on yourexperience of treatment, visitwww.hfea.gov.ukFor more information about embryo storage, see page 36 andwww.hfea.gov.uk/ForPatientsFor further information visit www.hfea.gov.uk | 17

The HFEA guide to Infertility | 2007/08Drugs and surgeryA COMBINATION OF FERTILITY DRUGS AND SURGERY ARE OFTEN USEDTO KICK-START TREATMENT EITHER BEFORE OR DURING IVFFOR WOMENIf you aren’t ovulating (producing andreleasing an egg each month) at all, oronly sometimes, fertility drugs - whichtrigger egg production in much the sameway as your body’s own hormones - canhelp. This is known as ovulation induction.You may get pregnant using fertility drugsalone, but they are more often used withother treatments such as intrauterineinsemination (IUI) and in vitro fertilisation(IVF). Read on for what to expect.Ovulation-inducing drugsClomiphene citrate, usually knownsimply as Clomid, is the oldest andprobably the most widely used fertilitydrug. Taken as a pill, it tells your brainthat you are not producing enoughoestrogen, which indirectly stimulatesyour ovaries into producing eggs.What for Straightforward ovulationfailure in women under 40.Possible side effects Hot flushes,mood swings, nausea, breasttenderness, insomnia, increasedurination, heavy periods, spot breakouts,weight gain. Some experts think yourrisk of ovarian cancer may increaseslightly if you take it for more than a year.Pituitary stimulatorsPulsed gonadotrophin-releasinghormone (GnRH), such as Gonadorelin,kick-starts the pituitary gland into action.A small battery-operated pump usuallyworn on your upper arm injects pulsesof the drug directly into yourbloodstream (hence the term ‘pulsed’).This triggers egg production bymimicking your body’s production of ahormone produced by the pituitary.What for Ovulation failure resulting froma lack of the hormone GnRH.Possible side effects Stomach pains,sickness and nausea, heavy periods andheadaches.Ovary-stimulating hormonesDrugs containing follicle-stimulatinghormone (FSH) and/or luteinisinghormone (LH) stimulate the ovaries toproduce eggs. These include Gonal-f,Puregon, Menogon, Menopur andMerional. They are injected into a muscleor under the skin by your doctor at theclinic, your GP or practice nurse.Alternatively, you may be shown how toinject yourself at home. When the eggsare mature, you are given a singleinjection of the hormone human chorionicgonadotrophin (hCG) to trigger therelease of an egg.What for To stimulate ovulation beforetreatment cycles, or if you havepolycystic ovary syndrome (PCOS) andyour ovaries are not responding toClomid. They are also used for infertilitycaused by failure of the pituitary glandand in some cases of male infertility.Possible side effects Over-stimulationof the ovaries, known as ovarian hyperstimulationsyndrome (OHSS, see page24); increased risk of multiple pregnancy(twins, triplets or more) when used forovulation induction, allergic reactions andskin reactions.During treatment, your doctor willusually prescribe other drugs for youto take at various times to give themmore control over your treatmentcycle. These may include:Cycle-suppressing drugsDrugs such as Goserelin and Burserelincopy the action of natural hormonesthat block the release of the twohormones controlling ovulation: FSH andLH. These are known as gonadotrophinreleasinghormone (GnRH) analogues.You take them as a nasal spray or as adaily or monthly injection before, or at thesame time as, fertility drugs.What for To stop the menstrual cycle.Possible side effects Hot flushes,night sweats, headaches, vaginaldryness, mood swings, changes inbreast size, breakouts of spots, acneand sore muscles.18 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilitySurgical optionsDrugs that maintain pregnancyProgesterone, for example Cyclogest,Gestone, Crinone or Progynova, can betaken after the injection of the pregnancyhormone, hCG, or on the day embryosare returned to the womb. You takethem as a vaginal suppository, a pill, gelor by injection into the buttock.What for To thicken the lining of thewomb in preparation for nurturing apossible embryo.Possible side effects Nausea,vomiting, swollen breasts.FOR MENDrugs are not so important in thetreatment of male infertility asthey are in female treatment.However they may occasionally beprescribed in certain situations.These may include:Antibiotics to treat infection orinflammationVitamins C and E to improve spermmovement, although there is noconvincing evidence that thisimproves the chance of pregnancyGonadotrophin injections or pumpadministration for certain rareconditions in which no sperm isproducedDrugs that close the bladder neckwhen sperm are being ejaculated intothe bladder instead of the penis(retrograde ejaculation)FOR WOMENMy tubes are blockedbecause of chlamydia.I have heard that an operationmight help.Surgery used to be popular when IVFand ICSI treatments were lessadvanced and available, but anoperation can still help in somecases. Blocked tubes, caused byinflammation and scarring as a resultof infections such as chlamydia, forexample. Others include fibroids,endometriosis and other conditionsaffecting the womb or tubes.These days, keyhole surgery is mostoften used. Your doctor at the fertilityclinic will be able to advise onwhether surgery is the best route foryou and also if it is available on theNHS.I was sterilised two years agoas I thought I didn’t want morechildren. But now I have a newpartner and we want to try for ababy. Can my tubes berepaired?You can have an operation to rejointhe ends of the fallopian tubes.Success rates are higher if you weresterilised quite recently and if thetubes were clipped rather than tied.Keyhole sterilisation reversal(laparoscopic anastomosis) can alsobe done but is generally lesssuccessful than open surgery.Instead of the 10cm bikini line cutinvolved in traditional sterilisationreversal surgery, the surgeon makesa 1cm cut near your belly buttonthrough which a laparoscope (smalltelescope with camera attached) isinserted to allow the surgeon torejoin the tubes.FOR MENI have had a vasectomy butmy partner and I now realise wewould like to have another baby.Is it too late?If you can’t produce any sperm, forexample, you may have had avasectomy or a failed reversal, a smalloperation known as surgical spermretrieval can be carried out to removethe sperm from the epididymis (wheresperm are made) or the testicles.PESA (percutaneous epididymalsperm aspiration) involves guiding asmall needle through the skin into theepididymis to draw out a smallamount of fluid containing sperm.TESE (testicular sperm extraction)uses the same method to remove asmall amount of tissue from thetestes. MESA (microsurgical spermaspiration) uses a small needle toextract relatively mature sperm fromthe epididymis. The collected spermcan be used to fertilise the eggs bymeans of ICSI (see page 26).Is treatment for varicocele apossible cure for male infertility?Probably not. Until recently, it wasthought that treating a varicocele(varicose vein of the testicles) in aninfertile man would increase thechance of becoming fertile again.Studies have shown that aftertreatment, the sperm count andquality often improve. This wasassumed to increase the chance offertility. However, a recent largeanalysis of studies looking at this issuefound that there was no goodevidence to say that fertility isincreased by treatment. If you areinfertile, your specialist will be able toadvise on current research.YOU ASK…Is the chance of having twins ortriplets higher if you are takingfertility drugs?The injected drugs used to stimulateovulation do increase your chances of amultiple pregnancy and birth: twins,triplets or more. If you are taking fertilitydrugs with IUI, many doctors will cancela cycle in which you produce a largenumber of follicles (egg sacs) as thisincreases your chances even more.If you have IVF, the risk of a multiplepregnancy is limited by replacing one ortwo embryos.For further information visit www.hfea.gov.uk | 19

The HFEA guide to Infertility | 2007/08IcUI: Intrauterine InseminationTHIS IS A RELATIVELY SIMPLE FERTILITY TREATMENTWITH A PROVEN TRACK RECORD OF SUCCESSIntrauterine insemination (IUI)involves inserting sperm intothe womb to coincide withovulation (when an ovaryreleases an egg) to increasethe chances of conception.This treatment can be usedwhere there is unexplainedinfertility, or if ovulationproblems are identified. Sowhat actually happens?Is it for you?The clinic may recommendIUI if:your sperm count is low or yoursperm are poor movers (oftenreferred to as havingpoor motility)your sperm are not surviving thejourney through the cervicalmucus (sometimes it can be toothick for the sperm to passthrough) or because there areantibodies present that attackyour spermyou are experiencing impotenceor premature ejaculation.YOU ASK…Does IUI hurt?This treatment is usually fairly painlessalthough you may experience mildcramps similar to period pains.Very occasionally it may be difficult toget the catheter through your cervix,which can be uncomfortable, but yourdoctor should offer you painkillers toease any pain.How are sperm prepared?Sperm are washed to remove the fluidin which they swim (seminal fluid) andprepared to select the healthiestspecimens that are likely to be themost fertile. The sperm are then placedin the small tube or catheter to beinserted into the womb.What to expectFOR WOMENIf you are not using fertility drugs(known as an unstimulated cycle), IUIis done between day 12 and day 15of your monthly cycle - with day onebeing the first day of your period. Youare given blood or urine tests toidentify when you are ovulating, oryou can use an ovulation predictor kit.You may, however, need fertility drugsto stimulate ovulation (a stimulatedcycle), which, if prescribed by yourdoctor, usually come as an injectionand nasal spray (see page 18). Youreggs are tracked by vaginalultrasound scans as they develop. AsFOR MENsoon as an egg is mature, you aregiven a hormone injection tostimulate the egg’s release.The sperm is inserted 36 to 40 hourslater. The doctor inserts a speculum(a special instrument that keeps yourvaginal walls apart) into your vaginathrough which they then thread asmall catheter (a soft, flexible tube)into your womb via your cervix.Sperm, which have been previouslyprepared to select the healthiestones, are then inserted through thecatheter. The whole process takesjust a few minutes. You may wishto rest for a short time before goinghome - ask your clinic what theyrecommend.You will be asked to produce a sperm sample on the day the treatment takes place.20 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityDonor inseminationDonor insemination is where sperm isplaced into a woman’s reproductivetract at the time of ovulation to achievea pregnancy. This can be carried out ina clinic using IUI.Prior to treatment, all donor sperm willhave been properly screened forinfections such as hepatitis and HIV.This means freezing the sperm with aquarantine period of six months. From 5July 2007, fresh sperm, other than yourpartners would need to go through thesame screening process. This is due to achange in the law to improve patientsafety and standards.The expert says...See the section on ‘Using donatedsperm, eggs and embryos’ for moreinformation.‘IUI is one of the simple methods of helping couples with fertility problems.For unexplained infertility, IUI is usually the first line of treatment. This can be followedby IVF if unsuccessful.’Success ratingThe success rates for IUI using fertilitydrugs are around 15 per cent percycle of treatment, provided that theman’s sperm and the woman’s tubesare both healthy. As with othertreatments, IUI tends to be moresuccessful if the woman is youngerand, therefore, more fertile.After the treatment you will bebooked in by the clinic for apregnancy test to see if the treatmenthas been successful. If it fails afterseveral attempts, it suggests thatthere may be some underlying reasonfor your infertility and, depending onyour age, your doctor may suggestyou go on to try another treatmentsuch as IVF. All things being equal,it would be reasonable to try three tosix IUI treatments.Our story: Learn what you can about treatmentSeeta, 33, and her husband Tahir, 40,had been trying for a baby for a yearwithout success. Initial testssuggested PCOS, which later provednot to be the case. After treatmentthe couple, who live in Kilbarchan,Scotland, had their daughter, Hema.Seeta tells their story:Treatment time‘I was initially diagnosed with polycysticovary syndrome (PCOS) and then withunexplained infertility. We tried Clomid,which didn’t work, and then werereferred for IUI. After three failed cycleson the NHS, I conceived our daughter,Hema. The nurses were really good,friendly and kind and responsive to ourneeds. But there were a lot of frustratingsilly little things which would wind meup, such as long waiting times at theclinic, meaning I got back to work late.’Feelings‘We felt out of control because we werebeing told what to do and had no say inwhat we were offered. At first I thoughtthat the drugs would work and then Ihoped that IUI would work first time.When it didn’t I got upset and found itdifficult. Even though I had a fantasticpregnancy and sailed through it and thebirth, I never let myself think any furtherahead than I was at the time. As a resultwhen Hema was born at 37 weeks wehad bought very few clothes andequipment.’‘Coming from an Asian background,infertility is something that is notdiscussed openly although we ourselvesdidn’t feel that there was a stigma. Wetold a few people outside our immediatefamily and friends and I distancedmyself from some people who I felt werenot supportive for a while.’‘We felt it was quite personal and didn’twant everyone knowing. We didn’t wantto keep telling everyone if cycles failedat a time when we were still trying to getour own heads around it.’‘People think that because they gotpregnant easily it’s easy for everyoneand they can come out with hurtfulcomments. Although unintentional, youare very vulnerable when you are goingthrough treatment.’Our relationship‘It was hard at times because both of uswere in different places at differenttimes. Talking through things brought ustogether and I would say it has made usstronger as a couple.’Our tipsRemember you are not alone.Once you tell people they often say,“I know someone who has beenthrough that”.Learn what you can about treatment.We knew very little when we firstembarked upon it but as time wenton we learnt a lot more. There’splenty of information about thetechnicalities, but nothing about howyou are going to feel during or aftertreatment, or about complementarytreatments. After the third attempt atIUI, I went to see a Chinese medicalpractitioner and had acupunctureand Chinese herbs. I also did yogaand we joined the west of Scotlandsupport group, Cradle. This gave mesome control back, which was great.For further information visit www.hfea.gov.uk | 21

The HFEA guide to Infertility | 2007/08IVF: In Vitro FertilisationIN THE UK ALONE, APPROXIMATELY ONE BABY IN EVERY 80 IS BORN AS ARESULT OF IVF TREATMENT. IT HAS BECOME ONE OF THE MOST POPULARTREATMENTS, BRINGING HOPE TO THOUSANDS OF COUPLESIVF literally means ‘fertilisation in glass’,hence the familiar name of ‘test tube baby’.Eggs are removed from the ovaries andfertilised with sperm in a laboratory dishbefore being placed in the woman’s womb.Is it for you?The clinic may recommend IVF if:you are an older womanyou have been diagnosed with unexplained infertilityyour tubes are blockedyou have been unsuccessful with other techniquessuch as ovulation induction or IUI.What to expectFOR WOMENIVF involves several complex steps.Techniques differ from clinic to clinicbut a typical pattern of treatmentmight go like this:1 Boosting egg supplyAt the start of your treatment yourdoctor gives you drugs to block thehormones your pituitary gland usuallyproduces during your monthly cycle.This allows them better control overwhen your eggs are produced. You thentake different drugs to make yourovaries produce more than one egg(see page 18).2 Checking on developmentVaginal ultrasound scans are carried outto monitor your developing eggs. Theclinic will also do blood tests to chartthe rising levels of oestrogen producedby the eggs.As soon as the tests show that the timeis right, you will have another injection ofa different hormone to help your eggsmature. Timing is crucial, as you musthave this injection 34-38 hours beforeyour eggs are collected - this may meanyou having it last thing at night.3 Collecting eggsEggs are collected by ultrasoundguidance or, occasionally, by laparoscopy.Ultrasound guidance takes around30 minutes and you are either givena drug to make you drowsy or ageneral anaesthetic. Using vaginalultrasound to produce pictures on ascreen, your doctor inserts a thinneedle through your vagina into eachovary. They then guide the needleinto each egg sac in turn, suckingthe egg into it.Laparoscopy is done under ageneral anaesthetic. Your doctorinserts a laparoscope (smalltelescope with a light attached)through a small cut in your stomachfollowed by a fine needle to removethe eggs as before. Nowadays, it israre for laparoscopy to be used.4 Collecting spermAround the time your partner’seggs are collected, you produce afresh sample of sperm. This will bestored for a short time before thesperm are washed and spun at a highspeed, so that the healthiest and mostactive can be selected. If you are usingdonated sperm, the sample is takenfrom the freezer and prepared in thesame way.5 Fertilising the eggsYour eggs are mixed with your partner’ssperm and left in a laboratory dish for16-20 hours before they are checked tosee if any have fertilised. Any thathaven’t, or any that have fertilisedabnormally, are discarded. The remainingembryos are then left for another 24-48hours before being checked again.6 Preparing for pregnancyTwo days after your eggs have beencollected, you are given progesteronevia pessaries, injection or gel to helpprepare the lining of your womb.7 Transferring the embryosTwo to five days after fertilisation,one or two healthy embryos areusually chosen and put back intoyour womb through your cervix viaa catheter (a fine, thin tube). Thedecision about how many embryosare transferred is important becauseit affects not just your chance ofconceiving but also your chance ofhaving a multiple birth (see page 24).Remaining embryos may be frozen forfuture IVF attempts, if they are suitable(see page 36).22 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilitySuccess ratingIt is often thought that IVF has a high failure rate,but the overall success rate for conception is aboutthe same as in nature and sometimes better. Thechances of you having a baby, though, are slightlylower as women may miscarry early on, just as innatural conception.Female fertility diminishes with age, so if you areusing your own eggs, the younger you are, the higheryour chances of success. One in four women under30 have babies after IVF, but only one in ten by theage of 40.The expert says...Although hugely popular, IVF is not the answer to allfertility problems and is only recommended wherethere is a genuine reason and/or because simplermethods have failed. For women over 40, IVF cannotovercome the decline in the number and quality ofeggs that is part of the natural ageing process.Further optionsBlastocyst transferIIf you have good quality embryos but they fail to implant in thewomb, your doctor may suggest you try blastocyst transfer. Thisallows your embryos to develop to what is known as the blastocyststage before they are put back in the womb. A blastocyst is anembryo that has developed for five to six days after fertilisation bywhich time it has two different cell types and a central cavity.Allowing your embryo to develop for longer can increase yourchances of a successful pregnancy.Assisted hatchingBefore an embryo can attach to the wall of the womb (known asimplanting), it has to break out or ‘hatch’ from a gel-like shellcalled the zona pellucida. Some embryos have a tougher shellthan others, which makes it more difficult for them to do this.Making a hole in or thinning this shell (using acid, laser ormechanical methods) may help embryos to ‘hatch’. Someclinicians believe that the use of assisted hatching results in betterpregnancy rates, while others feel there is still too little informationto support its use. If your clinic suggests this treatment, do talk itthrough with them, asking why they are recommending it andwhat the perceived benefits will be in your case.Our story: We felt left out, not having a babyKate, 37, a self-employed advisoryteacher and her husband Rupert, 40,programme manager at a college offurther education, live inTwickenham. They had their son,Louis, aged 18 months, after threeattempts at IVF. Kate tells their story:Treatment time‘After an initial diagnosis of unexplainedinfertility, we discovered that my problemmight be PCOS-related. When our firstattempt at IVF using ICSI, funded by theNHS, failed we decided to go to aprivate clinic where we had two moreattempts.This time we were offered bothICSI and assisted hatching to helpthings along and I conceived Louis onthe second attempt.’Feelings‘Initially I experienced a deep sense ofemotional disappointment as if I hadbeen let down by my own body. Overthe next nine years my emotions veeredbetween defeat to determination, angerand resignation. Although we didn’t feelthere was any stigma attached to beingchildless we felt left out because wedidn’t have a baby.’‘We did not want to add to the taboo ofinfertility by not telling anybody. On thewhole people were overwhelminglysupportive although there were a fewwho said foolish or hurtful things. Welost a few friends but collected a lot ofgodchildren! Although we love them,what we really wanted was our ownchildren. My mum found it hard to knowhow to support me, but she found ahelpline for relatives of people withinfertility that was great.’Our relationship‘Although it brought us closer together itput a strain on our daily lives. When itwas clear that we would need IVF, weagreed I’d become a part time advisoryteacher. Rupert didn’t have such anoption. If there is a plus point, it’s thefact that we had learnt how to live witheach other before we had children.’Our tipsFind emotional support. Fertilityclinics are places of science andmedicine rather than emotions. Findsomeone outside your relationship tooffer you TLC.Make time to talk through all thestages of your treatment with yourpartner. Attend appointmentstogether and go for coffeeafterwards to talk. Listen to eachother without judgement andbe loving.You may not instantly bond withyour baby. I was anxious during mypregnancy and didn’t enjoy it. Ittook a couple of weeks to recoverand fall in love with Louis.For further information visit www.hfea.gov.uk | 23

The HFEA guide to Infertility | 2007/08IVF: In Vitro FertilisationYOU ASK…I’m 35. Can I have IVF on the NHS?As long as you are between the ages of23 and 39, you should be able to haveat least one cycle of treatment funded bythe NHS. There are various criteria toqualify for funding, including if you oryour partner have been diagnosed with afertility problem or if you have been tryingto conceive for at least three years,and do not already have children(see pages 10-11).Our doctor is sending us to an IVFclinic that’s miles away from wherewe live. Can I have treatmentcloser to home?You may be able to have ‘satellite’ IVFwhich means that most of the earlystages of treatment can take place atyour local clinic or hospital. Only theactual placing of the embryos in yourbody is done at the IVF clinic.The big advantage of satellite IVF is thatit’s less disruptive so you might not needto take time off work. You will also savethe time, cost and energy of travellingbackwards and forwards to the IVFclinic. Sometimes eggs can also beretrieved at the local unit and then takento the IVF clinic in a portable incubator.This is known as ‘transport IVF’.You can find HFEA-licensed clinics withsatellite or transport centres on the ‘Finda clinic’ search at www.hfea.gov.uk.What is natural cycle IVF?Natural cycle IVF involves collecting andfertilising the one egg that you releaseduring your normal monthly cycle. Thisavoids the side effects of fertility drugs(see opposite) and you are also lesslikely to have twins or triplets. Andbecause your ovaries aren’t beingartificially stimulated, they don’t need torest after IVF. So should your treatmentbe unsuccessful, you can try againsooner if you wish.Pregnancy rates are more or less thesame as with conventional IVF over threeto four attempts. It may be worth trying ifyour periods are fairly regular and youare ovulating normally, but you haveblocked tubes or unexplained infertility.Not all clinics offer this treatment.How many embryos should I havetransferred during IVF?Research shows that, for many women,limiting the number of embryostransferred during treatment to tworeduces the number of multiplepregnancies, without causing asignificant decrease in the pregnancyrate. This is why the HFEA guidelines saythat clinics should transfer a maximum oftwo embryos to women under 40, whilewomen who are 40 or over can have amaximum of three transferred.Where donor eggs are used, themaximum number of embryos that can betransferred is two, regardless of the age ofthe woman having IVF. This is because theegg donors are fertile women who have tobe under the age of 36.Some clinics now offer the transfer ofone embryo to certain women, normallythose under 35 with a good chance ofsuccess, particularly if they are havingblastocyst transfer (see page 23)Why would I want to avoid amultiple pregnancy?Although having twins may have someappeal because two children are aninstant family, you need to bear in mindthe increased risks and pressuresassociated with multiple births. If you arecarrying more than one baby, thepregnancy and birth are more likely tohave complications, both for you and foryour babies. For more information, visitwww.hfea.gov.uk/ForPatients.Did you know?Scientists and doctors took over ten years to develop IVF treatment.Louise Brown, who was born in July 1978 to a blaze of publicity, was thefirst ever ‘test tube’ baby.Treatment reactionsLike all medical treatments, IVF hasrisks as well as benefits. These caninclude reactions to drugs andcertain pregnancy problems.Drug reactionWhat it is: A mild reaction to fertilitydrugs.Symptoms: Hot flushes, feeling downor irritable, headaches and restlessness.What to do: Nothing. If symptomsdon’t get worse they usually disappear.Ovarian hyper-stimulationsyndrome (OHSS).What it is: A potentially dangerousover-reaction to fertility drugs used tostimulate egg production. Cysts developon your ovaries and fluid collects in yourstomach. In severe cases (about 1-2 percent) your ovaries become very swollenand fluid may fill the stomach and chestcavities. A fall in the concentration of redblood cells can lead to blood clots andblood flow to the kidneys may also bereduced.Symptoms: Swollen stomach andstomach pains. In severe cases nauseaand vomiting, severe stomach pains andswelling, shortness of breath, faintnessand reduced urine.What to do: OHSS is potentially veryserious, so if you start to experience anyof the above symptoms you mustcontact your clinic immediately. Theymay decide to stop treatment. If you arebadly affected you may have to go tohospital as an emergency. For moreinformation, visitwww.hfea.gov.uk/ForPatientsEctopic pregnancyWhat it is: When an embryo develops inyour fallopian tube rather than yourwomb. The chances of an ectopicpregnancy seem to be higher in womenhaving IVF especially if they already haveproblems affecting their tubes.Symptoms: Vaginal bleeding, lowpregnancy hormone levels and, ifpregnancy continues, miscarriage and arisk of the tube bursting.What to do: You should have apregnancy blood test to check for thepregnancy hormone, hCG. If you arepregnant you should also have a scan atsix weeks to check for the baby’sheartbeat and to make sure it is growingproperly in the womb. Report any vaginalbleeding or stomach pain to the doctor.24 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityGenetic testingSeveral centres in the UK are currentlylicensed to carry out tests on embryos todetect certain inherited diseases andproblems to ensure that only unaffectedembryos are selected before beingplaced back in the womb.Conventional tests for genetic diseasescannot be carried out until the 12thweek of pregnancy so testing embryosbefore they are implanted could help youand your partner to avoid having tomake the difficult decision of whether tohave a termination (abortion) if either ofyou is the carrier of a genetic diseaseand the embryo is affected.The tests are high-tech and thereforeexpensive.Pre-implantation geneticdiagnosis (PGD)If you have had several terminationsbecause your baby had a geneticdisease or you already have a child witha genetic disease and are at high risk ofhaving another, you might want toconsider PGD.It involves checking the genes of threeday-oldembryos conceived by IVF forgenetic diseases such as haemophiliaand cystic fibrosis. There are currentlyten UK clinics who offer this treatment.How is it done?In the laboratory, one or two cells areextracted from the embryo and areexamined to see if they are carrying theculprit genes. Some genetic diseases,such as Duchenne muscular dystrophy,only affect males. In this case the cell isexamined to find out the embryo’s sexand only female embryos are replaced.This procedure is not allowed simply toensure you have a baby boy or girl tobalance your family.Some serious or life-threatening geneticdiseases may be treated using stemcells from a family member whosetissue is a genetic match for theaffected person. Not all family membershave the same tissue type.In extremely rare cases, where nosuitable donor can be found, parentsof a child affected by a serious geneticdisease may try to have a new baby inthe hope that the blood from its umbilicalcord, which is rich in stem cells, may beused to treat the existing, affected child.Their chances of having a baby whosecord blood may be used in this way canbe increased by using PGD to identifyembryos with a tissue type whichmatches that of the affected child.This is a very complex and demandingprocedure and may be used only wherethe condition of the affected child isserious or life threatening. The proceduremust be authorised by the HFEA on acase-by-case basis.Find a list of conditions which PGD hasbeen licensed for under ‘treatmentsexplained’ on www.hfea.gov.ukPre-implantation geneticscreening (PGS)If you are over 35, with a high risk ofhaving a baby with a chromosomeproblem such as Down’s syndrome,or have a family history of chromosomeproblems, you may want to considerPGS. It may also be offered if youhave a history of recurrent miscarriageor have had several unsuccessfulIVF treatments.PGS involves testing embryos producedby IVF to make sure they have the rightnumber of chromosomes. It is alsocalled aneuploidy screening. Aneuploidyis where the embryo has the wrongnumber of chromosomes - for example,Down’s syndrome, where there are threenumber 21 chromosomes instead of theusual two.How is it done?As for PGD, except that chromosomesare examined to see how many thereare and if they are normal. There arecurrently eight UK clinics who offer thistreatment (visit ‘Find a clinic’ on theHFEA website for details).Chromosome countsChromosomes are tiny structuresfound in the centre of each cell inthe body. Each chromosome carriesthousands of genes, which instructyour body how to work.Chromosomes are made up of twochains of genetic material calledDNA. There are 23 pairs ofchromosomes (46 altogether) ineach of our cells, except for eggsand sperm, which each have 23chromosomes. When these fusetogether they create a single humanbeing with the usual 46chromosomes.FURTHER INFORMATIONVisit www.hfea.gov.uk/ForPatientsFor further information visit www.hfea.gov.uk | 25

The HFEA guide to Infertility | 2007/08ICSI: Intra-Cytoplasmic Sperm InjectionINJECTING AN EGG WITH SPERM CAN BE A SUCCESSFUL ANSWERTO MALE INFERTILITY ISSUESIntra-cytoplasmic sperm injection (ICSI),which involves injecting a single sperm intothe cytoplasm or centre of an egg, is thebiggest advance in infertility treatment sinceIVF. It was introduced in 1992 and the nextyear the first UK baby from ICSI treatmentwas born. Over 4,500 babies were born inthe UK during 2003/04 as a result of thisrevolutionary treatment for male infertility.So what actually happens?Is it foryou?The embryologist willexamine your sperm undera microscope and decidewhether ICSI could increaseyour and your partner’schances of having a baby.It may be performed if:What to expectFOR MENyour sperm count is very lowyour sperm cannot move properlyor are abnormally shapedthere are high levels of anti-spermantibodies in your semenyou and your partner have triedprevious IVF treatment but few orno eggs have fertilisedyour partner has responded poorlyto ovarian stimulation, producingfew eggs of which few have beenable to be fertilisedSperm has been retrieved directlyfrom the epididymis (PESA orMESA) or the testicles (TESE) or,rarely, by electroejaculation.FOR WOMENFOR MENYou take fertility drugs to stimulate your ovaries to produce more eggs, which arecollected on a certain day as for IVF (see page 22). These are then fertilised with yourpartner’s sperm (see below) and replaced in your womb in exactly the same way as forconventional IVF. Any suitable embryos not used at this stage can be frozen for futureuse. After the treatment, your clinic will arrange a future date with you for yourpregnancy test.You produce a fresh sperm sample onthe same day as your partner’s eggs arecollected. Your sperm are then used tofertilise her eggs by injection before theyare returned to the womb.26 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityYOU ASK…I’ve heard that ICSI can causebirth defects. Is this true?As ICSI is still relatively new, therehave been some concerns thatinjecting the sperm into an egg coulddamage it and lead to birth defects.Success ratingICSI can hugely boost your chances ofconception as the sperm don’t have totravel to the egg or penetrate it. Successdepends a lot on the skill and experienceof the clinic, but as the techniquebecomes more widespread,success rates continue to improve.As with IVF, the younger the woman,the higher the success rate.Age is less important for men as spermare freshly made and only healthy spermwill be used for ICSI. The quality ofsperm, however, does decrease asmen age.However, the first results from anongoing study led by Londonpaediatrician Dr Alistair Sutcliffe,published in July 2003, wereencouraging.Our story: Give yourself timeThe study compares 541 childrenconceived by ICSI and 440 by IVFwith 542 who were conceivednaturally. It showed thatat the age of five, the ICSI and IVFchildren were doing just as well asthe ones who were conceivednaturally.Another concern is that infertile mencould pass on their infertility to theirsons born through ICSI through theirgenes. There is no definitive answerto this yet.As with all risks, it is worth discussingthis with your clinic. You might alsolike to consider talking through yourconcerns and options with acounsellor or with other couples whohave used ICSI.For more information, seewww.hfea.gov.uk/ForPatients.The expertsays...‘ICSI has helped many thousandsof couples to have a baby, especiallyin instances of a man having a lowsperm count or poor quality sperm.But as the reasons for a low spermcount can lie in the genes, whichmay be passed through the male line,a man should always have a checkupblood test before going aheadwith ICSI.’Annette, 35, a civil servant andAlan, 39, a chartered surveyor fromRhondda in South Wales, had beentrying for a baby without successfor two years. Tests revealedthat poor sperm motility could bethe reason. Annette tells their story:Treatment time‘We didn’t really have any treatmentchoices because of Alan’s problems withhis sperm, so IVF with ICSI was our onlychance of having a baby. After twounsuccessful treatment cycles wechanged clinics and after a third cycle ourtwins Ffion and Lowri, who are now 14months old, were conceived.’Feelings‘The whole experience is emotionally andphysically battering. I remember sitting atmy desk feeling utterly drained and thinking“will I ever get over this?”. I didn’t realise itwas going to be as difficult as it was. But itwas all worth it in the end. We have twolovely little girls and despite all the ups anddowns I’m now over the moon.’‘At first we didn’t tell anyone except mymother and work colleagues who knewbecause I had to have time off work forthe first couple of rounds of treatment.But when we were asked at a familyparty yet again, “when are you going tostart a family?”, we decided to be honest.Most of our family and friends weresupportive. But there were some whosaid irritating things like “all you needis a weekend and a bottle of wine andyou’ll be fine.”Our relationship‘Going through treatment brought uscloser together. When things were bleakwe would think at least we’ve got eachother. That’s the main thing.’Our tipsGive yourself time to recover betweentreatments. I had the secondtreatment straight after the first and inretrospect, I wish I had given myselfmore time to recover.Stay positive. Our worst fear was thatit was going to fail.Be aware how difficult you may findpregnancy. When I did conceive it wasalmost: “Okay it worked. Now what?”I didn’t enjoy pregnancy and becausethe twins were born early I found ithard to get close to them. I supposeit was self-preservation - I didn’t wantto get too attached in case it allwent wrong.Get some support. I wish I’d had moresupport when we first started out. Wedid get support from family and friendsbut unless you have been through ityourself you have no real idea how itaffects people.For further information visit www.hfea.gov.uk | 27

The HFEA guide to Infertility | 2007/08GIFT: Gamete Intra-Fallopian TransferGIFT IS ONE OF THE EARLIEST FERTILITY TREATMENTS ANDIS STILL GOING STRONG TODAYGamete intra-fallopian transfer (GIFT) startsoff with gametes (your eggs and sperm)being collected in exactly the same way asfor IVF. The healthiest are chosen, mixedtogether and placed in one of the fallopiantubes (the tubes down which eggs pass fromthe ovaries to the womb). Fertilisation takesplace inside the body, just as it could havedone had you not had medical intervention.So what actually happens?Is it for you?FOR WOMENGIFT can help in many cases of unexplainedinfertility, for example, when your fallopian tubesaren’t blocked or damaged.FOR MENGIFT can help if you have a low sperm count orsperm with poor movement (low motility).Your doctor may suggest you try IVF to make sureyour sperm can fertilise your partner’s eggs.If successful, GIFT may be used in the nexttreatment cycle or cycles instead of repeating IVF.What to expectSuccess ratingThis varies across clinics, but around 25-30 per cent of womenusually get pregnant in any one treatment cycle. Like mostfertility treatments, GIFT is most successful in younger women.YOU ASK…Is GIFT licensed by the HFEA?Yes, from 5 July 2007, this treatment requires a licencewhen using partner/donor sperm or eggs in treatment.FOR WOMENBefore proceeding with GIFT, you maybe given a hysterosalpingogram (uterinedye test) and a laparoscopy to checkyour fallopian tubes are healthy andclear. Up to the point of egg collection,GIFT is exactly the same as for IVF(see page 22).Your doctor will make a small 5mm cutin your tummy (under anaesthetic) sothat they can insert a laparoscope(small telescope with a light attached)to view your womb and fallopian tubes.The healthiest one or two eggs arethen mixed with the prepared spermin a catheter (a fine, flexible tube). Thedoctor inserts the catheter to depositthe eggs at the end of one or bothfallopian tubes, nearest the womb.You need a short rest before goinghome and will be given someprogesterone, via injections, pessariesor gel, to build up the lining of yourwomb to provide a good environmentfor any fertilised eggs.FOR MENYou are asked to provide a spermsample on the same day that the eggsare collected. If donor sperm are beingused, they are carefully thawed beforebeing mixed with the collected eggs.28 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityUsing Donated Sperm, Eggs or EmbryosNEARLY 2,000 CHILDREN ARE BORN EVERY YEAR IN THE UK USING DONATEDSPERM, EGGS OR EMBRYOS. THERE ARE A NUMBER OF SITUATIONS WHERETHIS CAN BE APPROPRIATE AND CREATING A FAMILY IN THIS WAY CAN BEVERY FULFILLINGThe decision to go down this route, however,is not a straightforward one. It is stronglyrecommended that you and your partner,if you have one, talk to an experiencedcounsellor and to other people who havechosen this treatment option before makingany decisions to go ahead.Before you beginIt is tough going through fertility treatment,but the decision to use donated sperm,eggs or embryos will have a far-reachingimpact on you, your partner and yourrelationship with your respective families.You will need to be sensitive to your ownand your partner’s feelings and to giveyourselves time to think everythingthrough. Don’t rush into treatment - onlygo ahead when you feel ready.Don’t go it alone. Most clinics run localpatient support groups. The DonorConception Network is a national supportnetwork for people considering treatmentusing donor eggs, sperm or embryos,and for those who already have childrenconceived in this way (see page 44).Pause for thoughtYou may be considering usingdonated sperm, eggs or embryosbecause other fertility treatment hasbeen, or is likely to be, unsuccessful.Coming to terms with this can be likecoping with a bereavement. Giveyourself time to adjust.If you have a partner, you probablywanted to have their baby, not that ofanother man and/or woman, so it’s notsurprising if you feel a sense of loss atlosing that genetic connection.If you are single, you may be letting goof the hope of being a two-parentfamily, and having a partner withwhom to share the parenting.You may feel guilty that your spermand/or eggs cannot be used and feelthat the fact you are now consideringdonation is somehow your ‘fault’. Youmay also worry that your partnerblames you for the situation.You may feel disappointed, sad, angryand/or afraid - and so may yourpartner. It can be difficult to see themstruggling to come to terms with theirfeelings at the same time as dealingwith your own. However, it can oftenhelp if you are able to talk thingsthrough as you each work throughyour feelings.Sometimes discussing things witheach other only gets you so far. Youwill cope in different ways. Can you getsupport from friends or family? Or anexperienced counsellor can often help.Remember: genetic connection isn’twhat makes for a loving family asmany men and women who have hada child or children using donated eggs,sperm or embryos have proved. Manysay that the joy of becoming parents iseven greater because of everythingthey have been through together.YOU ASK…Will my baby look like me and/or my partner?Your clinic can provide details about thephysical characteristics of donorsavailable. They will attempt to matchdonor and patient characteristics. But justas with naturally conceived children, thereis no guarantee that your baby will closelyresemble the donor. Some ethnic groupsare under-represented in the availabledonated gametes or embryos. If you arefrom such a group, you may wish toconsider finding your own donor.Can the donor change their mind?Both you as the person being treated andthe donor must give written, ‘effective’consent. Donors have the right to changetheir mind at any time in the process untiltheir sperm, eggs or embryos are actuallyused in treatment.Using donatedspermUsing donated sperm in your treatmentis an option in some circumstances whenusing your partner’s sperm would beunlikely to be successful, or if you do nothave a male partner.Is it for you?This may be an option if:FOR WOMENyou are single or in a same sexrelationshipFOR MENyou are producing little or no spermyour sperm is unlikely to be able tofertilise an eggyou have a high risk of passing onan inherited diseaseyou have had a vasectomyWhat to expectThe clinic may do a pre-pregnancy check,including: details of your and your familymedical history; a physical examination;ultrasound scan and blood tests; bloodsugar and blood pressure check. Theymay also run some tests to make surethat you are producing eggs and thatyour fallopian tubes are healthy.Treatment takes place at the time youovulate (when an egg is released from anovary). Some clinics recommend fertilitydrugs to help maximise your chances.For further information visit www.hfea.gov.uk | 29

The HFEA guide to Infertility | 2007/08Using Donated Sperm, Eggs or EmbryosUsing donatedeggsIs it for you?This may be an option if:Success ratingThere is an average 25 to 40 per centsuccess rate for each treatment usingdonor eggs. This is slightly higher than theaverage success rate for conventional IVFacross all age groups, as donor eggs mustcome from someone aged 35 or under.Using donatedembryosIs it for you?This may be an option if:you have no ovaries or have hadthem removedyou have had cancer treatment whichhas damaged your ovariesyou are post-menopausalyou are producing few or lowquality eggsyou have tried to conceiveunsuccessfully using fertility drugsor IVFyou have had several recurrentmiscarriagesyou have irregular periods caused byhormonal imbalanceyou have a high risk of passing on anserious inherited disorder (see alsogenetic screening, page 25).What to expectFOR WOMENYou and your donor’s menstrual cyclesare synchronised and your womb isprepared to receive the eggs. The eggsare collected from your donor and mixedwith your partner’s or with donor’s sperm.Alternatively, the sperm can be introduceddirectly into the eggs (ICSI, see page 26)to fertilise them. When the embryos beginto develop, they are transferred to yourwomb as in standard IVF (see page 22).Occasionally eggs and sperm aretransferred together before fertilisationtakes place (GIFT, see page 28).FOR MENUnless you are using donor sperm, youwill give a sperm sample to check thatyour sperm are healthy and active. On theday that the eggs are collected you giveanother sperm sample which is mixedwith the donor eggs or introduced directlyinto the to fertilise them. Occasionallyeggs and sperm are transferred togetherbefore fertilisation takes place (GIFT).YOU ASK…How do I find donor?Some clinics may offer to put you on awaiting list for an egg donor - do askthem about how long they would expectyou to wait. There are some ways youcan speed up this process:You can advertise for an egg donor.You can ask suitable friendsor relatives.Some clinics enable you to ‘share’eggs. This is when another womanreceiving treatment donates some ofher eggs for you to use (providedenough are collected).If I’m using donated eggs,who is the legal mother of anychildren born?The woman having treatment isconsidered by law to be the baby’smother, not the woman who donated theeggs. If the woman who is treated has ahusband or male partner who gave hisconsent to the treatment, he is consideredby law to be the baby’s father.The waiting list for donor eggs inthe UK is too long - should I goabroad for treatment?The HFEA inspects clinics in the UKregularly, and licensed clinics have toabide by the HFEA Code of Practice. Wedo not regulate clinics in other countries.These may be subject to local standardsand regulations, which vary from countryto country. You should find out moreabout the standards of treatment you canexpect from a clinic you are considering.Egg donation is not without risk for thedonor. In the UK, donors are not paid andare required to give informed, writtenconsent. They must also be offeredcounselling and provide information aboutthemselves. This is not standard practiceoutside the UK. Ask the clinic about theiregg donor recruitment processes, andwhat information about the donor will beavailable to you and to any child bornfrom the donation. In the UK, the eggdonor has no legal responsibility or rightsin respect of children born as a result oftheir donation - this may not be the casein other countries, so you will need toseek independent legal advice.you, your partner, or both of you havethe sort of fertility problems that meanyou are less likely to be successfulusing your own sperm and/or eggsyou or your partner both have aserious condition that would beinherited by any children you have andyou wish to avoid passing it on, suchas Huntington’s disease (see page 27)you are single and post-menopausalWhat to expectYou have IVF treatment in the same wayas if you were using your own frozenembryos (see page 39). The physicalcharacteristics of the donors can bematched as closely as possible with thoseof yourself and your partner.YOU ASK…Who donates embryos?Most donated embryos are from peoplewho have completed their treatment. Iftheir treatment has been successful, therewill be brothers or sisters to your ownchild. Some couples donate embryos theycannot to use in their own treatment andwhich they do not wish to freeze.Using donatedeggs/embryosfrom abroadIf you want to import eggs/embryos backto the UK for treatment your clinic may beable to organise this for you. If a numberof conditions can be met (which yourclinic will be aware of) your clinic may beable to transfer the eggs/embryos withoutexpress authorisation from the HFEA. Insome cases, however, your clinic will needto apply to the HFEA on your behalf toimport from that country.It should be noted that the HFEA is notable to authorise imports fromunaccredited clinics within the EU orEuropean Economic Area (EEA).32 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityUsing Donated Sperm, Eggs or EmbryosBecoming a donorThere are many reasons to become adonor. You might want to help others or, ifyou have children of your own, you mightwant others to have the opportunity to bea parent. Your decision will have animportant impact on the people whoreceive your donation, on any childrenborn as a result and on you. It’s importantto think carefully about how you feel nowand how you may feel in the future.Donating sperm, eggs or embryos is verydifferent to donating organs or blood. Youare potentially creating a new humanbeing. You will have a genetic link withany child created. The clinic will offer youcounselling before you go ahead. Thisgives you a chance to discuss what isinvolved and consider future implications.You may also wish to contact the NationalGamete Donation Trust (see page 45).How do you feel about donating whenyou don’t necessarily know if a babywill be born as a result?How do you feel about the childfinding out who you are and possiblywanting to meet you?How do your partner and your familyfeel about you donating?How do you think you will feel in thefuture knowing that children who aregenetically related to you are beingbrought up by other people?How might a child you already havefeel knowing that they have a brotheror sister somewhere, conceived as aresult of your donation?Donating spermThe HFEA has rules for clinics onselecting sperm donors to help to ensurethey are healthy. Obviously this cannot becompletely guaranteed. Our criteria are:Donors have to be between the agesof 18 and 45. Over the past ten years,the average age has increased tobetween 36 and 40 and many donorsalready have children of their own.Donors must be offered counsellingand are encouraged to think about theimplications of donation.All centres offering sperm donationhave to freeze donated sperm samplesfor six months. This allows time for thedonor to be tested for infections suchas hepatitis and HIV. Provided thedonor doesn’t show any signs of thesediseases or of some other, potentiallyinheritable, conditions, the sperm canthen be used.Donating eggsYou have the right to decide whether youwant your eggs to be used for treatmentor for research (or both). You also havethe right to say your egg can only beused by a particular woman (a friend orrelative, for example).Your egg supply is boosted and eggscollected in the same way as for IVF (seepage 22). To avoid becoming pregnantyourself, you are advised to avoidunprotected intercourse during the timeyou take fertility drugs, and until afteryour first period following egg collection.Egg sharingIf you decide to share the eggs collectedfor your own IVF treatment with anotherwoman, you are also classified as an eggdonor.As with other people donating eggs,sperm or embryos, there are manydifficult emotional and social issues toconsider, which have been coveredelsewhere on these pages. In addition,you should consider:How might you feel if your eggsmake a baby for another couple butnot for you?Who are you going to tell about yourdecision to donate? If you feel that youcan’t tell anyone, this could be a signthat donation isn’t for you.How might you feel if a child born fromyour donated eggs wished to makecontact with you when they are 18?How might this affect you and yourfamily - including a child born to youand who is also genetically related tothe donor-conceived person?Donating embryosIf you have completed your family ordecided to call a halt to IVF, you may wishto donate any remaining embryos toanother person or allow them to be usedin treatment. Of course this is yourdecision, and your embryos can only beused in this way if you give your consentto this in writing.If you donate your embryos to anotherperson or couple to be used in treatment,the same rules on donation apply as todonating sperm or eggs. This means thatany child born from your donation will beable to find out identifying informationabout you when they reach adulthood(see page 30).How do you feel about your embryosmaking a baby for another person orcouple? If your eggs and yourpartner’s sperm were used to createthe embryos, the children born fromthem will be genetically yours.Who are you going to tell about yourdecision to donate? Particularly if youhave a child born from the same batchof embryos, what are you going to tellthem about possible brothers orsisters they may never meet?How might you feel if a child born fromyour donated embryos wishes tomake contact with you, and possiblyyour children, when they are 18?YOU ASK…What if I change my mind afterdonating?Both you and the person being treatedwill need to give your written, ‘effective’consent. You have the right to changeyour mind at any time in the process untilyour sperm, eggs or embryos are actuallyused in treatment.What legal responsibility do I havefor a child born from my donation?Any child born from your donation is thelegal child of the woman treated and herhusband or male partner, if she has one.You have no legal rights or responsibilityfor the child born. However, since thelifting of donor anonymity (see page 30),identifying information about you will beheld about you on the HFEA Register andmay be given to any people born fromyour donation once they are 18 years old.If you are considering donating freshsperm for use in treatment outside a clinic(for someone to use for homeinsemination or to an internet company,for example), you are considered by lawto be the father of the child, with therights and responsibilities this involves.We strongly recommend only donatingsperm through a clinic.How much will the clinic pay me formy donation?Donors cannot be paid in the UK.However, they can be compensated forcosts shown to be incurred throughdonating. This could include travel orchildcare expenses where receipts areprovided. Also, donors can claim for theloss of earnings to a daily maximum of£55.19 up to a maximum of £250 percourse of donation.For further information visit www.hfea.gov.uk | 33

The HFEA guide to Infertility | 2007/08SurrogacySOMETIMES, ASKING SOMEONE ELSE TO HAVE A BABY FOR YOU MAY BE YOURONLY REAL OPTION, BUT IT’S NOT SOMETHING YOU SHOULD CONSIDER LIGHTLYA matter of lawSurrogacy is a very complicatedlegal area, which is why werecommend that you seek advicefrom a solicitor before making anydecisions.The legal mother of the childat birthIs it for you?You may want to considersurrogacy if:you have a medical conditionwhich makes it impossible ordangerous for you to getpregnant and give birthyou have been unsuccessfulwith IVF.Surrogacy is when another womancarries, and gives birth to a baby for you.You and your partner (if you have one)are known as the ‘commissioningcouple’, while the woman who carriesand gives birth to your baby is the‘surrogate’.It’s vital that both parties are fullycommitted to the arrangement and thatyou understand the implications of whatis involved now and in future years. This iswhy it is so essential to talk these throughwith an experienced counsellor beforeyou start the surrogacy process. You willalso need to get legal advice beforestarting out (see panel opposite).If you are going through a fertility clinic,both you and your partner (if you haveone) and the surrogate and her partner(if she has one) will have to undergo thesame processes as if you were all startingany fertility treatment. This includes a‘welfare of the child’ assessment (seepage 13) and screening of donor eggsand sperm if applicable.What to expectThere are two ways of having a babywith a surrogate:1. You can use sperm from a malepartner, if you have one, and thesurrogate’s eggs. In this case,fertilisation is usually done by artificialinsemination or by IUI (see page 20).This is called full surrogacy(sometimes also referred to astraditional or straight surrogacy).2. You can use your own eggs and yourpartner’s sperm, or donated eggsinseminated with your partner’ssperm. This involves IVF (see page22) which must take place in alicensed clinic. This is called partialsurrogacy (also referred to asgestational or host IVF surrogacy).Pause for thought…What are you going to tell your family,friends and colleagues?How are you going to feel aboutanother woman carrying your baby?How confident and trusting do youfeel about the surrogate?How do you feel about the possibility ofthe surrogate having a multiple birth?If you or the surrogate already havechildren, what are you going to tellthem about the pregnancy and newarrival? How will you prepare them,and deal with their questions andpossible anxieties or jealousy?If the surrogate is a friend or familymember, how will you feel aboutthem seeing you bringing up thechild they have carried?The surrogate, as the woman givingbirth, will be the legal mother of thechild and will be put on the birthcertificate until you have appliedthrough the courts for a parental orderor adoption. Then legal parentage istransferred to you, or to you and yourpartner as a couple.The legal father of the child at birthUsually the surrogate’s partner orhusband will be the legal father of thechild and will be put on the birthcertificate. In Scotland, it is possiblefor your partner to be named on thebirth certificate, giving him legalparentage. Otherwise, you will have toapply through the courts for a parentalorder or to adopt the child.Parental order or adoptionYou may only apply for a parentalorder if you and your partner aremarried, domiciled in the UK and if thechild is genetically related to either oneor both of you. To apply for a parentalorder, the surrogate and the father ofthe child must consent unconditionallyto this being made, and the ordermust be applied for within six monthsof the birth. You will need legal adviceon applying for a parental order.If you cannot apply for a parentalorder, your only option is to adopt thechild. In such circumstances, the clinicwould be breaking the law if they wentahead and provided treatment beforebeing satisfied that a registeredadoption agency is involved in theprocess. This is a requirement underthe Adoption and Children Act 2002which applies to England and Wales(the requirements are slightly differentin Scotland and Northern Ireland). It isimportant that you get legal advicebefore beginning the process.34 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityYOU ASK…How can we find a surrogate?It is illegal for a clinic to find a surrogatefor you, so you will need to do thisyourself. A relative or friend may bewilling to help or you may prefer to find asurrogate who is not already known toyou. It’s worth talking to other peoplewho have experience of surrogacy tolearn how they found their surrogate. Bylaw, you are not allowed to advertise.What should we look for in asurrogate?Trust is vital, not least because you willneed to agree on issues like antenataltesting - for example, for spina bifida orDown’s syndrome - and decide whatyou will do if the baby had a congenitalproblem. Of course, any potentialsurrogate should be capable of a safeand healthy pregnancy and birth.Do we have to pay the surrogate?No. In some parts of the worldsurrogates are paid but this is notallowed in the UK. You can pay‘reasonable expenses’ - costs incurredby the surrogate such as clothes, travelexpenses and loss of earnings.What if the surrogate motherchanges her mind?It doesn’t happen often but she doeshave the legal right to change her mind,even if the baby is not genetically relatedto her. This is extremely difficult andpainful for everyone concerned, which iswhy it is so essential that you trust eachother and are clear and committed toyour arrangement from the outset.Our story: Ginny and I hit it off right awayMel, 38, and her partner Christopher,45, have five children aged between11 and 19. She had IVF to become asurrogate mother to Bruno forVirginia and Ian. Mel tells their story:Treatment time‘Ian and Ginny’s sperm and eggs wereused to create embryos and they wereplaced in my womb by IVF. I becamepregnant on the second cycle. We hadplanned a home birth but Bruno was tendays overdue so I ended up beinginduced at a local hospital. Ginny caughthim as he was born and they stayedwith him while I went to the ward.’Feelings‘I have always wanted to become asurrogate. I get the most enormouspleasure from my own children and forsomeone to have the possibility of havingchildren taken away from them seems sounfair. Ginny and I hit if off right away.Barely a day goes by when she doesn’ttext me a photo of Bruno. We talked andtalked before deciding to go ahead. FromOur story: As I held Bruno in my arms, it felt rightVirginia, 39, and her husband, Ian, 38,already had two children but longedfor another. However, Virginia has adisease of the womb calledAsherman’s syndrome. After fouroperations to try and put things rightthey learnt the only option of havingtheir own baby was host surrogacy.Treatment time‘I had two cycles of stimulation and eggcollection at a centre which supportedsurrogacy. We decided we would dothree cycles and then decide whether tocarry on trying but on the secondattempt Mel became pregnant.’Feelings‘The pregnancy felt quite surreal. Aftergoing through so much I couldn’t letmyself believe we were actually going tohave a baby. It did feel odd someoneelse being pregnant with our child. Until Iheld him in my arms I couldn’t quitebelieve it but Mel was fantastic, she reallymade us feel a part of it from the start.The birth was the most amazingexperience. As soon as I held Bruno inmy arms it felt right. Mel always made itclear that he was not her baby but wewere respectful of the enormous part shehad played. We want Bruno to be proudof being a surrogate baby. We will stay intouch with Mel and she will always be inour minds as Bruno grows up. I want herto be proud of us and the way we bringhim up. She’s a real inspiration.Our relationship‘We were totally committed to surrogacyand our relationship with Mel and herfamily. IVF and surrogacy are anthe outset it was always their baby but ofcourse you do bond with them; there’sno way you can’t especially towards theend of pregnancy and there was a bit ofsadness there when I handed him over.But all in all it has been the mostrewarding experience. I feel hugelyprivileged to have carried their baby andto think that I have changed the futurehistory of their family.’Our relationship‘My partner and kids were fully behind meall the way. He looked after me throughoutthe pregnancy and was there for the birth.I couldn’t have done it without him.’emotional rollercoaster. You need astrong relationship at the outset. Comingthrough this has made us even stronger.’Our tipsIt’s vital that there is absolute trustbetween you. I never doubted Mel.Get support. It’s stressful, bothemotionally and physically. We couldnot have survived it without thesupport of friends and family.Go to a clinic that supportssurrogacy. We took time to chooseone. It’s also important that thehospital where the baby will be bornis understanding.Don’t go it alone. Get advice andsupport. We chose the organisationSurrogacy UK because we found themessage board and regular gettogethersinvaluable. We went to amediation session to go througheverything involved.Never give up on your dream.For further information visit www.hfea.gov.uk | 35

The HFEA guide to Infertility | 2007/08Freezing and storing embryosIF SOME OF YOUR EMBRYOS CREATED DURING AN IVF CYCLE ARE NOT USEDYOU CAN HAVE THEM FROZEN AND STORED FOR USE AT A LATER DATEDuring IVF treatment, your ovaries may bestimulated to produce more eggs than usual,which means that you may end up with morehealthy embryos than you can use. UnderHFEA rules, clinics can only transfer amaximum of two embryos if you’re under 40and three embryos if you are 40 or over (andusing your own eggs). This is designed toreduce the risk of multiple pregnancy (givingbirth to twins, triplets or more).Most clinics will give you the chance to freezeand store suitable ‘spare’ embryos for futureuse. This can be as part of the IVF or ICSIpackage, or as an extra service for which youmay have to pay. Your embryos may also beable to be stored for future use if your plannedtreatment needs to be cancelled after eggcollection - for example, if you have overrespondedto the drugs (see page 24).Is it for you?If you store your embryos it meansthat if you decide to have anothergo at IVF you don’t have to gothrough the expensive, andsometimes difficult, process of eggstimulation and collection all overagain. It also means you don’t haveto take fertility drugs that put you atrisk of ovarian hyper-stimulationsyndrome or OHSS (see page 24)and you can maximise your chanceof conception from one eggcollection.Making decisionstogetherBefore your embryos can be stored, theclinic asks you and your partner to signa form agreeing to their freezing andstorage. This includes how long youwant your embryos stored for, how theymay be used and what you want tohappen if one of you dies or becomesincapable of withdrawing your consent.Storage timesEmbryos can normally be stored for upto five years, though this can beextended under certain circumstances(see below). You can change your mindat any time, in which case you should letthe clinic know about your decision.While the embryos are in storage, theclinic should contact you regularly tocheck that you want them to remain instorage. Don’t forget to let the clinicknow if you move, or if yourcircumstances change in other ways,36 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to Infertilityfor example, if you split up or divorce.Should you divorce, this does notautomatically mean that either person’sconsent is withdrawn.Towards the end of the storage period,the clinic will get in touch and ask youwhat you wish to do next, such asextend the storage period, allow theembryos to perish or donate them forresearch or to another patient.In certain situations you may beallowed to store your frozen embryosfor up to ten years. For example,if you or your partner have beendiagnosed as infertile and are likely towant to use your embryos for futuretries at IVF or if you are at risk ofhaving a child with a geneticallyinherited condition.Very occasionally, you may be allowedto store your frozen embryos for evenlonger than ten years, for example, ifyou or your partner become infertile asa result of cancer treatment. In thiscase the embryos cannot be storedonce you reach 55 (unless you turn 55during the first five years of storage).The freezing processOnly embryos which are developingnormally and have not fragmented aresuitable for freezing. Before your embryosare stored they are frozen in a vat ofliquid nitrogen.The medical term for this iscryopreservation, from the Greek wordcryo meaning cold. A special liquid calleda cryoprotectant is added to protect theembryos against freezer damage.Donating your embryosAlternatively, if you have completed yourfamily or decided to call a halt to IVF,you may wish to donate your embryosto another person or allow them to beused in research. Of course this is yourdecision, and your embryos can only beused in this way if you give your consentto this in writing.If you donate your embryos to research,they could be used in studies to help IVFtechnology, or in stem cell studies.Even when great care is taken,however, some embryos do not survivefreezing and thawing. This is why, whenit comes to your next treatment cycle,you may be advised to have moreembryos thawed than can actually betransferred.Both of you will need to consent againto any future use of your embryos.For more information about researchprojects licensed by the HFEA, visit Howwe Regulate on www.hfea.gov.uk.If you donate your embryos to anotherperson to be used in treatment, thesame rules on donation apply as todonating sperm or eggs. This meansthat any child born from your donationwill be able to find out identifyinginformation about you when they reachadulthood (see page 30).YOU ASK…We want to have another go at IVFusing our frozen embryos. What areour chances of success?Your chances of having a baby using athawed frozen embryo are slightly lowerthan with a fresh embryo. The goodnews is that your chances of becomingpregnant with a thawed frozen embryoare not affected by how long theembryos have been stored.What happens when we want touse some of our frozen embryos?It all depends on why you need fertilitytreatment and what your doctor advises.If your periods are regular and your clinicoffers treatment every day, your doctormay suggest using a natural cycle. In thiscase, ultrasound scans may be used tocheck your developing eggs and urine orblood tests to check when you areovulating (releasing an egg). This meansyour doctor can thaw and replace theembryos when the lining of your womb isat its most receptive.If your periods aren’t regular, or youdon’t have them at all, your doctor maysuggest you use drugs to dampen downyour natural hormones and trigger a‘false’ period. You are then givenprogesterone to help prepare yourwomb for an embryo. The embryos arethen thawed and replaced in the womb(see page 22).What happens if my partner orI withdraw consent?Who do the embryos belong to?The law states that if either of youwithdraws consent, the clinic has toremove the embryos from storage.Under HFEA rules, the clinic must informboth parties that this is aboutto happen, either by telephone or inwriting. This is why it is so importantto let your clinic know if your contactdetails change.Wasn’t there a high profilemix-up with some frozen embryos,which led to a couple havinganother couple’s baby? Could thishappen to us?It is very unlikely these days. All clinicshave a system for double-checking thecouples being treated and the identity ofthe eggs, sperm and embryosthroughout the culture process. Beforeembryos are transferred, the woman’sidentity is also double-checked. TheHFEA’s Incident Alert System, which wasintroduced after this mix-up occurred,means that licensed clinics can shareany lessons they have learnt from actualincidents or near misses to keepreducing the risk of anything like thishappening again.For further information visit www.hfea.gov.uk | 37

The HFEA guide to Infertility | 2007/08If you become pregnantMAKING THE SWITCH FROM BEING A FERTILITY PATIENT TO A MUM-TO-BEMAY NOT BE AS EASY AS YOU IMAGINED. BUT THERE ARE WAYS TO MAKETHE TRANSITION SMOOTHERMost clinics will offer you a pregnancy test acouple of weeks after your treatment but if youwant to do one for yourself, home pregnancytest kits will also give you a pretty accuratereading at a couple of weeks - do bear in mindthat there’s a risk of a test showing a falsepositive result if it is done too early.If the result is negative, or you get a weakpositive, it’s worth doing another test two weekslater just to double-check. Whatever the result,don’t forget to inform the clinic so they canenter it on the HFEA register.If you are pregnant, you may start to noticeother clues such as missing your period,feeling or being sick, sore breasts, wanting togo to the loo more often, tiredness, sensitivityto strong tastes and smells, as well asmood swings.Next stepsSome clinics stay in touch during theearly weeks of pregnancy and do one ormore ultrasound scans to make sureyour baby is developing normally. Othersdo not offer continued care, in whichcase you will need to make your ownarrangements for your antenatal careand birth.If you are going to have NHS care, thefirst step is to visit your GP who willarrange a booking visit at the hospitalwhere you will meet the midwives anddoctors who will look after you duringyour pregnancy. If you are goingprivately, then you will need to make anappointment with a private consultant.Finding supportIf your treatment is successful, don’t besurprised if you are not as overjoyed asyou expected to be. It can take time toadjust and you may go through arollercoaster of emotions. This is quitenormal. The important thing is to acceptyour feelings whatever they are, and toremember that most mums-to-be gothrough a mix of emotions on discoveringthey are pregnant whether they havebeen through fertility treatment or not.Antenatal care doesn’t usually start untilaround the 12th week of pregnancy butyou may feel you need some supportduring these first few weeks. Some clinicswill encourage you to stay in touch andyou may find it helpful to talk to one oftheir counsellors. The clinic may be ableto put you in touch with other womenwho have had a baby after fertilitytreatment and will be able to empathisewith how you are feeling. There are alsogroups you could join, such asACeBabes, or an internet support group(see page 44).MakingconnectionsIf you had fertility treatment at a largeNHS hospital with a maternity unitattached (even if you paid privately), or ina large private hospital with a maternityunit, there may be links between the twoand your notes can be passed from oneto the other so they know your history.If this is not the case, it will be up to youto tell the doctors and midwives caring foryou about your fertility treatment and it’sworth thinking carefully about how muchyou want to disclose. For example, if youare an older woman but used donor eggs(ie, from someone under 35) in yourtreatment, and if your doctors do notknow this, they may suggest antenataltests that are, in your case, unnecessary.38 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityCheckpointEmotionally, you may find being pregnant tough but physicallyyour pregnancy should not be any different to someone whodidn’t have fertility treatment. There are some situations whichmay mean you need more scans or appointments at thehospital. These include:previous miscarriages or stillbirthsage - the older you are the greater your risk of complicationssuch as pregnancy diabetes and pre-eclampsia (the highblood pressure condition of pregnancy)expecting twins, triplets or moreyour general healthNatural concernsMore than a million babies around the world have now beenborn as a result of assisted conception treatment such as IVFand the chances are you will give birth to a healthy baby. But aswell as huge benefits, all medical treatments carry some risks.There is no way of ruling out the slight chance of problems, nomatter how the baby was conceived, and most problems arerelatively minor. You may find it hard, but try to relax and enjoyyour pregnancy if you possibly can. You have come on a longjourney and now you are about to set out on another.YOU ASK…Will I be more likely to miscarry after fertilitytreatment?The average rate of miscarriage following IVF is slightlyhigher than following natural conception. This is because,firstly, women who have fertility treatment will have apregnancy test very early on in the pregnancy. A womanwho conceived naturally may experience what sheconsiders to be a ‘late period’ when in fact an embryo hasbeen created, but failed to implant. Secondly, the risk ofmiscarriage rises with the mother’s age. Women who havefertility treatment tend, on average, to be older than thosewho conceive naturally.I’ve been told my risk of an ectopic pregnancy ishigher because my tubes are blocked or damaged.What is this?An ectopic pregnancy is one in which the embryo startsto grow outside the uterus, usually in the fallopian tube,but sometimes in the ovary, cervix or elsewhere in theabdomen. The risk is slightly higher if your tubes are notworking properly.Tell-tale signs to watch out for include pains low down inyour stomach and vaginal bleeding. If you do experienceeither of these, get medical advice immediately. Ultrasoundscans and blood tests can help to confirm the diagnosis.For further information visit www.hfea.gov.uk | 39

The HFEA guide to Infertility | 2007/08Moving onSOMETIMES TREATMENT DOESN’T WORK AND YOU MAY NEED TIME TO RECOVERPHYSICALLY AND EMOTIONALLY BEFORE THINKING ABOUT TRYING AGAINAfter the physical stress of treatment and thebuild-up of hopes, it can be devastating ifyour treatment doesn’t work. Many expertsrecommend that you wait for a couple ofmonths before trying again, which gives youa break from the stress of treatment and achance for your body to recover.You may want to talk to your specialist aboutwhether to try again - using the same or adifferent method - and whether there is anythingyou can do to boost your chances ofconception. Seeing a counsellor can also helpyou to talk through your feelings.Remember that, just as in any pregnancy, manyembryos are lost early on. Were you not havingtreatment, you might just think this is a late period,rather than a miscarriage. But when you arehaving fertility treatment, you’re only too awarethat the embryo transferred to your womb hasfailed to implant and that you have ‘miscarried’.The reasons whyThere are two main reasons whythings can go wrong.1. Treatment may have to be cancelledbefore the eggs are collected orbefore the embryos are put back inthe womb if:the ovaries don’t respond to thedrugs used to stimulate eggproductionthe ovaries over-respond (ovarianhyper-stimulation) to the drugs usedto stimulate egg productionno eggs are found during eggcollection - for example, if the follicles(egg sacs) have developed but theyare found to be emptythe collected eggs don’t fertilise sothere are no embryos to betransferred to the wombthe embryos fail to develop in thelaboratory, so cannot be transferredto the womb.2. The embryos fail to develop in thewomb. This is the most commonreason for treatment beingunsuccessful. There is often noobvious explanation but one of thefollowing may be the reason:Embryos have a reduced chance ofimplanting. The egg may not havematured properly in the first place, ormay not have divided as it shouldafter fertilisation.Chromosome problems. Manyembryos that look healthy have faultychromosomes - the structures insidecells that contain genes and controlhow the cell works and what it does.New pre-implantation geneticscreening (PGS, see page 25) is atechnique that can be used to detectsome chromosomal problems. Thiscan make it easier for doctors toexclude embryos with such problems,and transfer other embryos instead.Poor blood flow to the womb. Even ifthere is nothing wrong with the qualityof the embryos, if circulation to thewomb is poor, you have less chance ofgetting pregnant and a greater chanceof miscarriage if you do conceive.Next stepsWhether you have had one or more triesat fertility treatment, sooner or later youmay have to decide whether or not togive it up. You may feel you cannotafford more treatment, financially oremotionally, or your specialist may tellyou that you have little or no chance ofconceiving. Alternatively, you may justfeel that enough is enough and yousimply want to get on with your life.It is important that you feel you aremaking a choice to stop treatment, andthat it is not a sign that you have failed, ornot done enough. Of course, it need notmean giving up all hope of having children- you may wish to explore the possibilityof other options, such as adopting andfostering. Remember, there are no wrongor right choices, just the one that is rightfor you. It’s often helpful to talk to acounsellor, or to others who have been ina similar situation, as you come to thisdecision about how you can best ‘moveon’. There is a national organisation, Moreto Life, which provides support for peoplewho are exploring what life withoutchildren has to offer (see page 45).40 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityThe ‘Immunology Question’A few clinics may suggest immunologicaltreatment. Some experts believe thatthere is a link between a number ofimmunological abnormalities andinfertility, IVF failure or pregnancy loss.These are sometimes thought to berelated to the level of ‘natural killer cells’or NK cells.Such tests and any recommendedtreatment can be expensive and it is agood idea to discuss the risks andbenefits in detail with your clinic. To date,the view of the Royal College ofObstetricians and Gynaecologists(RCOG) is that there is not enoughavailable data to justify the blood tests,endometrial biopsies and steroids thatmay be involved. The HFEA supportsthis view and will continue to monitorand review the available evidence forsuch treatments.For more information, visitwww.hfea.gov.uk/ForPatientsand www.rcog.org.ukOur story: Our decision evolved over about five yearsBarbara, an IT consultant, hadto have an ovary removed as a resultof an ovarian cyst, and she also hadblocked fallopian tubes. Her husbandJeremy has low sperm motility.Despite four attempts at IVF,treatment failed to work and theydecided not to carry on.Barbara tells their storyTreatment time‘We went private because the NHSwaiting lists for treatment were longand we had the funds to pay. After fourfailed cycles the hospital suggesteddonor treatment. We decided to giveourselves time to consider this as wellas adoption but eventually decided notto pursue treatment.’Feelings‘Although I’m a positive person it wasexhausting keeping up a front and Iwithdrew from a lot of activities. Ourdecision not to pursue treatment oradoption evolved over about five years.I can look at it reasonably strongly nowbut deep down I am still angry at theunfairness of it all.’‘I told my boss who was understanding,but I didn’t tell anyone else at workand shortly after ending treatment,I switched jobs - partly I think inretrospect to get away from anenvironment I associated with loss andstress. My closest friends weresympathetic but regular chats with mymom who lives in Canada were the bestsupport while my mother-in-law gave methe hugs and comfort that I missed frommy own mom. My dad didn’t really knowwhat to say and would start talkingabout my brother’s children -as though talking about them would‘encourage’ me to be successful at IVF!’Our relationship‘It put a strain on our relationshipespecially immediately after we hadstopped treatment and before wewere really able to think about movingon. We were both so ‘lost’ that if oneof us had made a move to chuck it inthe other might not have had thestrength to do anything about it. But westuck it out, stayed close - even withouttalking about it a huge amount - timemarched on, and we both startedrealising that life is good, although it’snot necessarily what we would havechosen and we are thankful that wehave each other.’Our tipsTake it a step at a time.Don’t let fear stop you whether it’sto continue with treatment or stop.Don’t automatically assume thatothers will understand what you’regoing through.If people say or do somethinginsensitive they aren’t necessarilytrying to hurt you. Choose a‘technique’ for dealing with it, such assilently counting to ten while smilingat them - they’ll get the hint - and inmost cases will feel horrified thatthey’ve hurt you.Making acomplaintIf you are not happy with your clinic, orfeel things went wrong because ofsomething they did or did not do, youmay want to complain. All licensedclinics have a proper complaintsprocedure and a named person tohandle complaints. Minor complaints canoften be dealt with on the spot.Before you decide to make a complaint,you may wish to consider what kindof outcome you are hoping for fromthe clinic. Do you, for example, wantthem to:investigate the matter?accept they have made a mistakeand apologise to you?take disciplinary action against amember of staff?offer you compensation?reassure you that the same thing willnot happen again to another patient?a combination of these actions?For more information about theprocess of making a complaint (whichdiffers depending on whether yourtreatment is NHS funded or whether youare paying for your own treatment), visitwww.hfea.gov.uk/ForPatientsFor further information visit www.hfea.gov.uk | 41

The HFEA guide to Infertility | 2007/08Clinics licensed by the HFEA( as at 1 March 2007)For more information about each of these clinics, including the range of services theyprovide, whether they treat NHS or fee-paying patients and contact details, please go to theFind A Clinic section of our website: www.hfea.gov.uk/ForPatientsScotland1 Aberdeen Fertility Centre2 Ninewells Hospital, Dundee3 Lanarkshire Acute Hospital NHSTrust, Airdrie4 Edinburgh Assisted Conception Unit5 Glasgow Nuffield Hospital6 Glasgow Royal Infirmary84 Glasgow Centre for ReproductiveMedicineEngland (by region)North East7 Newcastle Fertility Centre at Life8 Centre for Assisted Reproduction,Gateshead9 Sunderland Fertility Centre10 Hartlepool General Hospital11 Bishop Auckland General Hospital12 London Women’s Clinic, Darlington13 Cleveland Gynaecology and FertilityCentre, Middlesbrough14 The James Cook University Hospital,MiddlesbroughNorth West15 St Mary’s Hospital, Manchester16 CARE Manchester17 Manchester Fertility Services18 Hewitt Centre for ReproductiveMedicine, Liverpool Women’s HospitalYorkshire and the Humber19 ACU Leeds20 Clarendon Wing, Leeds GeneralInfirmary21 Hull IVF Unit22 CARE Sheffield23 Centre for Reproductive Medicine,SheffieldEast Midlands24 Queens Medical Centre Fertility Unit,Nottingham25 NURTURE, Nottingham26 CARE Nottingham27 Derby City General Hospital28 Leicester Fertility Centre29 CARE NorthamptonWest Midlands30 Burton Hospitals NHS Trust, Burtonupon Trent31 Shropshire and Mid-Wales FertilityCentre, Shrewsbury32 St Jude’s Women’s Hospital,Wolverhampton33 BMI Priory Hospital, Birmingham34 Midland Fertility Services, Aldridge35 Birmingham Women’s Hospital36 Centre for Reproductive Medicine,CoventryEast37 The Fertility Unit, PeterboroughDistrict Hospital38 The Rosie Hospital, Cambridge39 Bourn Hall Clinic, Cambridge40 Isis Fertility Centre, Colchester41 Brentwood Fertility Centre42 Essex Fertility Centre, Buckhurst HillGreater London43 London Female and Male FertilityCentre, Highgate44 Homerton University Hospital,Hackney45 CRM London, Marylebone46 Reproductive Medicine Unit,UCL Hospital NHS Trust, Holborn47 North East London Fertility Services,Ilford48 UCH London, Camden49 IVF Hammersmith, Acton50 Assisted Reproduction andGynaecology Centre, Marylebone51 The Centre for ReproductiveMedicine, Barts and the London53 The Lister Fertility Clinic, Chelsea54 London Women’s Clinic, Marylebone55 The Harley Street Fertility Centre,Marylebone56 Cromwell IVF and Fertility Centre,Chelsea57 London Fertility Centre, Marylebone58 Chelsea and Westminster Hospital,Fulham59 The Bridge Centre, London Bridge60 Guy’s Hospital, WaterlooGreater London (cont)61 ACU King’s College Hospital,Camberwell62 Queen Mary’s Hospital, Sidcup63 Shirley Oaks Hospital, Croydon64 BMI Chelsfield Park ACU, OrpingtonSouth East65 Oxford Fertility Unit66 BMI The Chiltern Hospital FertilityServices Unit, Great Missenden67 The Woking Nuffield Hospital68 BMI The Chaucer Hospital,Canterbury70 Wessex Fertility Limited,Southampton71 The Princess Anne Hospital FertilityUnit, Southampton72 BMI The Esperance Hospital, SussexDowns Fertility Centre85 South East Fertility Unit, TunbridgeWells86 The Agora Gynaecology and FertilityCentreSouth West73 Southmead Hospital, Bristol74 Centre for Reproductive Medicine,University of Bristol75 Bath Assisted Conception Clinic76 Salisbury Fertility Centre77 Peninsular Centre for ReproductiveMedicine, Exeter78 BMI The Winterbourne Hospital,Dorchester79 South West Centre for ReproductiveMedicine, PlymouthWales80 London Women’s Clinic, Swansea81 Cardiff Assisted Reproduction UnitNorthern Ireland82 Regional Fertility Centre, Belfast83 Origin Fertility Care, Belfast42 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to Infertility1Scotland84 3564243Greater4445 4647London4849 50 5153 54 5556 575860 5961636264NorthernIreland8283NorthWestNorthEast7891011121413Yorkshire andthe Humber192021Wales80778115 1618 1724252627 EastMidlands3031 32 2833373435 36West 293839Midlands737475South West782322657670716667SouthEast4142London857286East406879For further information visit www.hfea.gov.uk | 43

The HFEA guide to Infertility | 2007/08Useful contactsACeBabesACeBabes offers support on pregnancyfollowing fertility treatment, multiplebirths, donor conception for donorsand recipients, decisions surroundingfrozen embryos, trying for siblings,deciding to end treatment, and tellingchildren how they were conceived.Provides a quarterly newsletter,sub-group news sheets, meetings,personal contacts for specific conditionsand an interactive website.Tel: 0845 838 1593Website: www.acebabes.co.ukBritish Infertility CounsellingAssociation (BICA)BICA aims to promote high quality,accessible counselling services for thosewith fertility problems. It offersinformation to patients seeking details ofcounsellors specialising in infertility.Tel: 01372 451 626Website: www.bica.netCancerbackupThis charity offers independent,accessible information, practical adviceand support for people affected bycancer. Its range of information bookletsincludes how cancer treatments canaffect fertility (and the future fertility ofteenage patients).Tel: 0808 800 1234Website: www.cancerbackup.org.ukChild Bereavement TrustThis charity’s philosophy is based onlearning from families who haveexperienced the death of a baby or childor from children who have experiencedthe death of their mother, father, brotheror sister.Tel: 0845 357 1000Website: www.childbereavement.org.ukChildlessness Overcome ThroughSurrogacy (COTS)The main objective of COTS is to passon collective experience to surrogatesand would-be parents, helping them tounderstand the implications ofsurrogacy.Tel: 0844 414 0181Website: www.surrogacy.org.ukDaisy Network PrematureMenopause Support GroupDaisy Network provides support andinformation for women who have gonethrough an early menopause. Memberscan speak to others who have beenthrough egg donation cycles, bothsuccessfully and unsuccessfully. Alsopublishes factsheets and a quarterlynewsletter and has an annualconference.Tel: 0845 122 8616Website: www.daisynetwork.org.ukDonor Conception Network(DC Network)DC Network provides contact andsupport for people who have childrenconceived, or who plan family creation,using donated gametes throughdonor insemination (DI) and IVF withdonor sperm or donated eggs. Alsoprovides support for adult offspring ofdonor conception.Tel: 020 8245 4369Website: www.dcnetwork.orgGenetic Interest Group (GIG)A national alliance of patientorganisations with a membership of over130 charities which support children,families and individuals affected bygenetic disorders.Tel: 020 7704 3141Website: www.gig.org.ukInfertility Network UK (I N UK)I N UK provides practical and emotionalsupport to those experiencing difficultiesin conceiving whatever stage of theirjourney they are at. There is a regionalnetwork and local support groups, andthe charity also produces factsheetsand other information, including a video.They have a telephone advice line,medical advisers and a website withnews, forums and information.Tel: 0800 008 7464Website: www.infertilitynetworkuk.com44 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityMiscarriage AssociationThe Association provides support andinformation on pregnancy loss.Tel: 01924 200799Website:www.miscarriageassociation.org.ukMore to LifeA national support network providing asupport service for people exploring whatlife without children has to offer - bothinvoluntary childlessness, and those forwhom fertility treatment is no longer aconsideration.Tel: 08701 188 088Multiple Births FoundationThe Multiple Births Foundation providesprofessional support and information aboutall aspects of multiple births.Tel: 020 8383 3519Website: www.multiplebirths.org.ukNational Childbirth Trust (NCT)The NCT helps parents to have anenriching experience of pregnancy, birthand early parenthood, providing localsupport and contacts for socialnetworking. It runs antenatal classes andprovides information on maternity issues,breastfeeding and postnatal support,including specialist groups for Caesareansand miscarriage.Tel: 0870 770 3236Website:www.nctpregnancyandbabycare.comEndometriosis UKThe Society provides a helpline, localgroups and clubs, a newsletter and otherpublications, workshops and conferences.Tel: 0808 808 2227Website: www.endo.org.ukNational Gamete Donation Trust(NGDT)The NGDT was founded as a registeredcharity in April 1998 in order to raiseawareness of, and seek ways to alleviate,the shortage of sperm, egg and embryodonors in the UK. The NGDT is a centralreference point for donors, recipients andhealth professionals.Tel: 0845 226 9193Website: www.ngdt.co.ukNational Institute forClinical Excellence (NICE)NICE is part of the NHS. It is theindependent organisation responsible forhelping patients, health professionals andthe public to make decisions abouttreatment and healthcare.Tel: 020 7067 5800Website: www.nice.org.ukPink Parents UKPink Parents’ services to lesbian, gay,bisexual and transgendered familiesincludes information and support to thosewho would like to have children.Tel: 08701 273 274Website: www.pinkparents.org.ukProject Group on AssistedReproduction (PROGAR)PROGAR campaigns in two main areas:for the right of people with fertility difficultiesto informed choice and quality of care,including counselling; and for the right ofpeople to have access to identifyinginformation about their genetic origin.Tel: 0121 622 3911Website: www.basw.co.uk/progarProgress Educational Trust (PET)This UK charity provides information anddebate on assisted reproduction andhuman genetics, promoting discussionamong patients, the wider public andprofessionals on their social, legal andethical implications. PET holds regularpublic debates and conferences andproduces a free web and email news andcomment service, BioNews, with supportfrom the Department of Health.Tel: 020 7278 7870Website: www.progress.org.ukStillbirth and Neonatal Death Society(SANDS)SANDS provides support for parents andfamilies whose baby is stillborn or diessoon after birth.Tel: 020 7436 5881Website: www.uk-sands.orgSurrogacy UKA website and message board providingadvice on surrogacy in the UK. It was setup by Elizabeth Stringer and Carol O’Reilly,who have been involved in surrogacy since1994.Tel: 01531 821889 (10am-2pm)Website: www.surrogacyuk.orgTwins and Multiple Births Association(TAMBA)TAMBA provides support for families withtwins, triplets or more, and forprofessionals involved with their care. It hasa network of local twins clubs andspecialist support groups, and providespublications and information packs.Tel: 0870 138 0509Website: www.tamba.org.ukUK DonorlinkA pilot voluntary contact register set up toenable people conceived through donatedsperm and/or eggs, their donors and halfsiblingsto exchange information and -where desired - to contact each other. Theregister is for anyone over 18 who wasconceived with donated sperm or eggs, orwho donated in the UK before the HumanFertilisation and EmbryologyAct came into force in August 1991.Tel: 0113 278 3217Website: www.ukdonorlink.org.ukVerityVerity is a self-help organisation for womenaffected by polycystic ovary syndrome(PCOS) and is dedicated to improving thelives of sufferers.Website: www.verity-pcos.org.ukUseful websitesThere are many websites that provideinformation about infertility andopportunities to ask questions andexchange personal experiences withothers. A few that patients havementioned to us are:www.fertilityfriends.co.ukwww.may-b-baby.co.ukwww.gettingpregnant.co.ukwww.ivf-infertility.comwww.singlemother.typepad.comwww.ivfworld.comLet us know of others you find helpful.The HFEA cannot vouch for the information supplied by other organisations mentioned in this Guide.Nor does the inclusion of such organisations’ details in the Guide imply any endorsement by the HFEA.For further information visit www.hfea.gov.uk | 45

2007/08 | The HFEA guide to InfertilityGlossaryAbandoned Cycle:An IVF treatment cycle cancelledafter drug administration has begunbut before egg collection.Amniocentesis: Withdrawal ofamniotic fluid from the amniotic saccontaining the foetus, usuallybetween week 14 and 18 ofpregnancy. Genetic diseases of thefoetus can be revealed by tests onthis fluid and the foetal cells itcontains.Amnion: The inner membrane of thesac in which the embryo develops.Amniotic fluid: The fluid filling thecavity between the embryo and theamnion.Assisted hatching: Mechanical, laseror chemical breaching of the zonapellucida (outer layer) of the egg.Assisted Reproductive Technologies(ARTs): Collective name for all artificialtechniques used to assist women toconceive children, including IVF andICSI.Asthenozoospermia: A below normalnumber of sperm in the maleejaculate.Azoospermia: The complete absenceof sperm in male ejaculate.Blastocyst: An embryo that hasdeveloped for five to six days afterfertilisation.Blastomere: A cell taken (by biopsy)from a blastocyst.Cell: The basic unit of all livingorganisms. Complex organisms suchas humans are composed of somatic(body) cells and germ line(reproductive) cells.Cervical mucus: Secretionssurrounding the cervical canal, whichduring ovulation, alter in amount andtexture to allow sperm penetration.Cervix: The narrow passage at thelower end of the uterus (womb),connecting to the vagina.Chlamydia: A sexually transmitteddisease which may remainundetected for a long time. It maydamage female and malereproductive systems, causinginfertility.Chorion: The outer membrane tissueof the primitive placenta.Chorion villus sampling (CVS):Removing a small amount (biopsy) ofplacental chorionic villi for geneticanalysis, usually between week 8 and12 of pregnancy.Chromosome: Threadlike structure ofDNA with associated proteins locatedin the cell nucleus, containing geneswhich carry genetic information.Cleavage: The division of the zygote(cell formed by fertilisation) toproduce a blastocyst.Clomid: A drug used in stimulated DIand IUI cycles.Clomiphene: A fertility drug used tostimulate the production of follicles.Congenital malformations: Anymalformation seen at birth, eitherresulting from genetic (inherited) orenvironmental causes.Counselling: Discussions aimed atgiving emotional support to helppatients understand and cope withthe consequences of infertilitytreatment.Cryopreservation: The storage ofgametes or embryos by freezing atlow temperatures.Cytomegalovirus (CMV): A memberof the herpes groups of viruses. Mostadults and children who catch CMVhave no symptoms, although somepeople may get a fever, sore throat,fatigue and swollen glands. CMV is ofmost risk to unborn children ofwomen who get CMV for the firsttime during pregnancy. About 7 to10% of these babies will havesymptoms at birth or will developdisabilities including mentalretardation, small head size, hearingloss, and delays in development.DeoxyriboNucleicAcid (DNA): Themajor constituent of chromosomes,and the hereditary material of all livingorganisms.Dizygotic: Derived from two (di) eggs(zygote). Dizygotic twins form whentwo separate eggs are fertilised byseparate sperm.Donor: Person who allows theirgametes or embryos to be used forfertility treatment or researchpurposes. Although the geneticparents of children created using theirgametes, donors are not the legalparents when treatment wasprovided in a UK licensed clinic.Donor Insemination (DI): Theintroduction of donor sperm into thevagina, the cervix or womb itself.Egg or oocyte: The gamete producedby a woman during her monthlycycle.Egg collection or egg retrieval:Collection of eggs from a woman’sovary using an ultrasound guidedneedle, or a laparoscope (a fibreoptictelescope used for looking into theabdomen) and needle.Egg donation: Donation of eggs by afertile woman for the treatment ofothers or for research.Egg sharing: An arrangement with aclinic to reduce IVF treatment costs,where a woman undergoes atreatment cycle, donates some of hereggs, but uses some herself.Embryo: A fertilised egg that has thepotential to develop into a foetus.Embryo biopsy: The removal andculture of one or two cells from anembryo in vitro prior to geneticscreening.Embryo division: Splitting of anembryo grown in vitro, at a very earlystage, into two or more sections.Each section can be grownseparately producing multiple clones(fission cloning) of the single originalembryo.46 | For further information visit www.hfea.gov.uk

The HFEA guide to Infertility | 2007/08Embryo freezing and embryo storage:Spare embryos can be frozen(cryopreservation) and stored forfuture use.Embryo transfer: The replacement ofembryos back into the femalepatient.Endometriosis: A female condition inwhich endometrial cells, whichnormally line the uterus, implantaround the outside of the uterusand/or ovaries, causing internalbleeding, pain and reduced fertility.Endometrium: The lining of the wombwhich grows and sheds during anormal menstrual cycle and whichsupports a foetus if a pregnancyoccurs.Epididymis: A highly convoluted tubeabout seven metres long connectingthe testes to the vas deferens. Spermmoves along the tube and is storedin the lower part until ejaculation.Fallopian tube(s): The pair of tubeswhich lead from the ovaries to theuterus (womb). After an egg isreleased from one of the ovaries, it istransported through a Fallopian tubeto the uterus. The tubes are the siteof fertilisation in natural conception.Fertilisation: The penetration of anegg by a sperm resulting in theformation of an embryo. Naturallyfertilisation occurs in the woman’sbody (in vivo), but it can also occur inthe laboratory (in vitro).Fibroid: A ball of fibrous musculartissue which may grow in themuscular wall of the uterus. This cancause pain and excessive menstrualbleeding and result in impairedfertility.Flow cytometry (sperm sorting): Amethod of sperm sorting used forsex selection. X and Y chromosomebearingsperm are stained withdifferent fluorescent dyes, and canthen be sorted by colourFoetus: The term used for an embryoafter the eighth week of developmentuntil birth.Follicle(s): A small sac in the ovary inwhich the egg develops.Follicle-stimulating Hormone (FSH): Apituitary hormone which stimulatesthe follicle production by the ovary.Often administered in assistedconception to stimulate production ofseveral follicles (ovulation induction).Gamete: The male sperm or femaleegg which fuse together to form azygote.Gamete Intrafallopian Transfer (GIFT):A procedure in which eggs areretrieved from a woman, mixed withsperm and immediately replaced intoone of the woman’s Fallopian tubes,so fertilisation occurs inside the body(in vivo).Gene: The unit of inheritance.Everyone inherits two copies of eachgene. A dominantly inherited geneticdisease occurs when only one copyof the gene is sufficient to producethe disease e.g. Huntington’s chorea.A recessively inherited disease onlyoccurs if both copies of the defectivegene are present e.g. Tay-Sachs’disease, Sickle cell disease.Genome: The basic set of genes inthe chromosomes in any cell,organism or species.Gonadotrophin Releasing Hormone(GnRH): Hormone released by thehypothalamus which stimulates thepituitary to produce LuteinisingHormone (LH) and Follicle-stimulatingHormone (FSH).Gonadotrophins: Drugs used tostimulate the ovaries similar to GnRH.Gradient sperm sorting methods:Way of sorting X and Ychromosomes containing sperm, forsex selection.Human Chorionic Gonadotrophin(HCG): A protein hormone usuallysecreted by the chorionic villi of theplacenta. Its presence in the maternalblood or urine indicates pregnancy.HFE Act: The Human Fertilisation andEmbryology Act 1990.HFEA: Human Fertilisation andEmbryology Authority.Hysterectomy: The surgical removalof the uterus (womb).Hysterosalpingogram: An x-ray of theFallopian tubes, through which dye ispassed, to see if they are obstructed.Implantation: Where an embryoembeds itself in the uterus lining,after passage through the Fallopiantubes.Impotence: Term for a man’s inabilityto perform sexual intercourse or gainan erection.Inner cell mass: A clump of cellsgrowing within and to one side of theblastocyst from which the embryodevelops.Insemination: The artificial placing offreshly ejaculated or frozen sperm inthe female reproductive tract.Intra-cytoplasmic Sperm Injection(ICSI): Where a single sperm isdirectly injected into the egg.Intra-uterine Insemination (IUI):Insemination of sperm into the uterusof a woman.Intra Vaginal culture (IVC): A methodof incubating sperm and aspiratedoocytes together in a container heldin a woman’s vagina, allowing in vitrofertilisation without using complexlaboratory facilities.In Vitro Fertilisation (IVF): Humaneggs and sperm mixed together in alaboratory to achieve fertilizationoutside the body. The embryosproduced may then be transferredinto a female patient.In vitro: Performed outside the body(i.e. in the laboratory).In vivo: Performed in the body.Karyotype: The microscopicappearance of a set ofchromosomes, including theirnumber, shape and size.For further information visit www.hfea.gov.uk | 47

2007/08 | The HFEA guide to InfertilityGlossaryLaparoscopy: Examination of thepelvic or other abdominal organs witha fibreoptic telescope insertedsurgically below the naval. Duringlaparoscopy, suction applied to theneedle can be used to recover eggsfrom follicles in the ovary.Licence: A legal document stipulatingterms and conditions for which acentre may carry out a licensablefertility treatment at a specifiedpremise.Live birth rate: The number of livebirths achieved from every 100treatment cycles started.Luteinising Hormone (LH): Hormonereleased by the pituitary gland inresponse to GonadotrophinReleasing Hormone (GnRH)production. Essential for developmentof eggs and sperm.Menstrual period/Menstruation: Themonthly bleed which takes place if nopregnancy occurs, caused by thesloughing off of the womb’s lining.Menstrual cycle: A woman’s monthlycycle where the egg is released froman ovary, the uterus develops andfinally blood and tissue are lost viathe vagina if a pregnancy does notoccur.Microsurgical Epididymal SpermAspiration (MESA): Extractingrelatively mature sperm from theepididymis using a small needle.Monozygotic: Meaning single (mono)egg (zygote). Monozygotic twins formwhen one fertilised ovum separatesinto two identical zygotes.Morula: The ball of cells formingabout 3 - 4 days after the cleavage ofthe fertilised ovum.Multiple birth: When a multiplepregnancy actually results in the birthof two or more babies.Multiple birth rate: The percentage ofall births in which more than onebaby was born.Multiple pregnancy: A pregnancywhere two or more foetuses developat one time in the uterus (womb).Neonatal death: The death of a babywithin 28 complete days of delivery.Nucleus: The part of a cell whichcontains the genetic material, DNA.Oestrogen/Oestradiol: Female sexhormone produced by the ovary.Levels fluctuate during the menstrualcycle.Oligozoospermia: Low sperm count.Less than twenty million sperm permillilitre. Severe if less than five millionsperm per millilitre.Oocyte: The female gamete (egg).Ovary: The female reproductive organproducing oocytes from hormonestimulatedgerm cells.Ovarian Hyperstimulation Syndrome(OHSS): A serious complicationfollowing stimulation of the ovarieswith gonadotrophin drugs.Ovulation: The release of an egg froma follicle in the ovary.Ovum: The female gamete (egg).Partial Zona Dissection (PZD): Inconjunction with IVF, making a smallhole in the egg’s gelatinous coating,with a small glass needle, to assistsperm to reach the outer eggmembrane.Percutaneous Epididymal SpermAspiration (PESA): A technique forsperm recovery. A fine needle ispassed into either the epididymalregion of the testes, or the coiledtubing outside the testicles thatstores sperm (epididymis), and spermrecovered by gentle suction.Peritoneal cavity: The cavity of theabdomen where the Fallopian tubesand the uterus are situated.Perinatal Mortality Rate: Perinatalmortality is the total number of foetaldeaths and neonatal deaths.Pituitary: Gland in the brain whichproduces many hormones includingFollicle-stimulating Hormone (FSH)and Luteinising Hormone (LH).Polycystic Ovarian Syndrome:Condition where many small cystsform on the ovary, resulting inhormonal imbalances which cancause infertility. Treatment involvesdrugs or surgery.Polymerase Chain Reaction: Aprocess used in DNA analysis.Pregnancy rate: The number ofpregnancies achieved from every 100treatment cycles commenced.Preimplantation Genetic Diagnosis(PGD): The removal of one or twocells from an embryo to test forspecific genetic disorders/characteristics prior to embryotransfer.Preimplantation Genetic Screeningfor Aneuploidy (PGS): The removal ofone or two cells from an embryo, fortesting to ensure the chromosomenumber is correct (euploidy) and notmore or less than usual (aneuploidy).Primitive streak: Thickening in surfaceof embryos which results in the firstclearly recognisable stage inembryonic development.Profasi: Purified Human ChorionicGonadotrophin used in assistedconception to mature follicles andcause ovulation to occur.Progesterone: Hormone produced byboth the ovary and corpus luteumafter ovulation encouraging thegrowth of the lining of the womb.Prostate Gland: A gland whichsecretes an alkali solution uponejaculation making up a major part ofthe ejaculate.Selective reduction: The procedure inwhich one or more normal foetusesin a multiple pregnancy resulting fromassisted conception are destroyed.The procedure may be hazardous tothe remaining foetus(es).Seminiferous tubules: Very long andconvoluted tubules which make upthe bulk of the testicles. It is here thatsperm is produced.48 | For further information visit www.hfea.gov.uk

The HFEA guide to Infertility | 2007/08Sex selection: The sex of an embryois determined using PGD, in order toavoid sexlinked diseases.Sperm: Male gametes (or maturemale germ cells). Of the millions ofsperm present in the ejaculateroughly half carry X chromosomes,and half Y chromosomes. A singlesperm is called a spermatozoon.Sperm sorting: The separation ofsperm carrying X chromosomes fromthose carrying Y chromosomes priorto fertilisation, in order to determinethe sex of the offspring. Used for sexselection.Spermatid: An immature sperm cell.Stem cell: Reproduce indefinitely andhave the capacity to develop(differentiate) into a large number ofdifferent cell types.Stillbirth: The birth of a dead infant.Stimulated cycle: A treatment cycle inwhich stimulation drugs are used toproduce more eggs than usual in thewoman’s monthly cycle.Stimulation drugs: Stimulate awoman’s ovaries to produce moreeggs than usual in a monthly cycle.Also known as superovulatory drugs.Subzonal sperm insertion (SUZI): Atechnique whereby one or severalsperm are injected directly throughthe zona pellucida (outer layer) of theoocyte.Superovulation/stimulation: Themedical stimulation of the ovary withhormones to induce the productionof multiple egg-containing follicles ina single menstrual cycle.Swim up: Technique for separatingsperm, based on their ability to swimthrough a liquid.Teratozoospermia: Poor spermmorphology (shape) which causesinfertility.Testicular Sperm Aspiration (TESA):Sperm extraction technique whichinserts a needle into the lower regionof the testes to remove a small pieceof testicular tissue.Testicular Sperm Extraction (TESE):Sperm extraction technique involvesexposing testicular tissue through asmall cut in the scrotum and theremoval of a small piece of testiculartissue.Testis: Testicle or male gonad.Transvaginal aspiration: A method ofegg recovery in which a needle isinserted through the top of the vaginainto the ovary lining.Transvaginal oocyte recovery: Thefemale bladder is emptied and aneedle passed through the vaginausing ultrasound guidance in order torecover eggs.Treatment cycle: One completelicensed treatment. Commences withdrug administration or firstinsemination.Trisomy: A syndrome reflecting thepresence of three chromosomes ofone type instead of the normalnumber of two. An example isTrisomy 21 resulting in Down’ssyndrome.Ultrasound: High frequency soundwaves used to provide images oftissues, organs and other internalbodily structures.Ultrasound-guided aspiration: A nonsurgical,noninvasive method of eggrecovery using ultrasound images toguide the path of the oocyte recoveryneedle.Unstimulated cycle: A natural cyclewhere no drugs are given to stimulateegg production.Uterus: The female womb in whichthe embryo develops.Varicocele: A varicose vein on thetesticles. These may cause testicleoverheating and be detrimental tosperm production.Vas Deferens: Pair of tubes whichconnect the epididymis to the urethraand transport sperm duringejaculation.Welfare of the child: The social andethical considerations used whenconsidering the well-being of anindividual under the age of 18.Zona drilling: The use of chemicals todissolve the gelatinous coating of theegg leaving a hole through which thesperm can enter.Zona Pellucida: The transparentmembrane or shell surrounding theoocyte (egg).Zygote: The cell formed as a result offertilisation.Zygote Intra-fallopian Transfer (ZIFT):The transfer of embryos to theFallopian tubes for purposes ofachieving a pregnancy. Embryos aretransferred at the fertilised egg (onecell embryo) stage.For further information visit www.hfea.gov.uk | 49

The HFEA guide to Infertility | 2007/08Ask the clinicTHE FIRST CONSULTATION WITH A DOCTOR OR CLINIC CAN SOMETIMES BECONFUSING OR DIFFICULT. DO REMEMBER THAT CLINIC STAFF ARE THERETO HELP YOU AND WILL BE HAPPY TO DISCUSS YOUR QUESTIONS ANDCONCERNS WITH YOU. IT’S VITAL THAT YOU FEEL FULLY INFORMED ABOUT,AND COMFORTABLE WITH, THE RECOMMENDED TREATMENTSome patients find it helpful to keep a diary ofclinic appointments, cycle dates and otherinformation, such as notes from your consultationsand questions that arise in between appointmentswhich you would like to raise next time.There are many issues raised throughout thisGuide and you have probably also received a lot ofinformation from friends, doctors and the internet.We’ve listed some of the questions here that youmay also want to ask when you visit your clinic,to help you make the most of your consultation.What are the benefits of the treatment you’verecommended and why do you think it’s the bestoption for me?How many patients at your clinic have had thistreatment in the last two years, and how many ofthem have become pregnant/had a baby?Are there alternative treatments? If so, what dothey involve, and why do you think they are lesssuitable for me?What other options are available to me if thistreatment doesn’t work?How does my age affect the choice of fertilitytreatment?What drugs will I have to take, and what are the usualside effects they might have?Are there any alternatives to the drugs you havementioned?Can you break down all the costs involved in thistreatment? Are there any other costs that might arise?Is there any way these costs can be reduced?What lifestyle changes can I make to boost my chanceof success (eg, diet, exercise, stopping smoking, etc)?How will these help?What kind of counselling or advice service do youprovide? Is there a cost for this, or how many freesessions can I have?Does this clinic have a patient support group I can join,or are there other groups you would recommend?Could you tell me more about the assessmentprocess you will need to carry out before giving methe go-ahead for treatment (this is sometimes knownas the ‘welfare of the child’ assessment)?What happens next? Do I (and/or my partner) need todo anything now?50 | For further information visit www.hfea.gov.uk

2007/08 | The HFEA guide to InfertilityAcknowledgementsThe HFEA would like to thank the following individuals and organisations for their time and help incompiling the information in this year's HFEA Guide to Infertility:Clare Brown, Chief Executive, Infertility Network UKJennifer Hunt, Senior Infertility Counsellor, Hammersmith HospitalDr Maybeth Jamieson, Consultant Embryologist, Glasgow Royal InfirmaryWalter Merricks, Co-founder of the Donor Conception NetworkSusan Seenan, Communications Officer, Infertility Network UKJane Garton and Patsy Westcott for textTangerine for designOur thanks also to the many patients, past and present, who have provided helpful commentsand suggestions.Above all, we would like to thank those who have been willing to talk about their personalexperience of treatment in this Guide, and to share what they have learned to help others.For further information visit www.hfea.gov.uk | 51

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