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Beyond Pill Scares? 47<br />
Some participants had specifi c concerns, such as a woman who had<br />
experienced a DVT and was asking <strong>the</strong> list about <strong>the</strong> safety of <strong>the</strong> Mirena<br />
Coil—which has progesterone, not estrogen—but was wondering if she<br />
could take it when not anticoagulated: “My gynecologist has a concern<br />
about <strong>the</strong> progesterone since I am presently not on [anticoagulants]<br />
and will not be going on unless I have ano<strong>the</strong>r event (DVT). Is <strong>the</strong>re<br />
anyone who is using this and at present is not on anticoagulants?” For<br />
o<strong>the</strong>rs birth control was an ongoing story on <strong>the</strong> list, communicating<br />
anxieties about differing advice and changing options:<br />
Well to those who remember me talking about my monthly friend<br />
visiting and how heavy it was. My doctors decided to put me on Depo.<br />
I told her I was concerned because some of you told me not to take<br />
[Depo], and she said that we needed to stop my periods completely.<br />
Now I am scared, because I have 2 injections of Depo in my system,<br />
and <strong>the</strong>y are wanting me to try this low dose progestin, Micronor. A<br />
BCP [birth control pill]!<br />
The responses <strong>the</strong> new members received varied. Some were reassuring,<br />
stating that <strong>the</strong> Mini Pill is “okay for us FVLers.” O<strong>the</strong>r reassured, sometimes<br />
with caveats, based on personal experiences:<br />
I tried <strong>the</strong> depo shot. . . . Hated it! I spotted on and off for 3 months.<br />
I also emotionally never felt like myself. I now have been taking <strong>the</strong><br />
progestin-Micronor for 4 months it has been much better[,] no period,<br />
thus far. . . . [or] My daughter has an IUD. She is hetero FVL. She<br />
has never had a clot and has only had to take Lovenox during her<br />
pregnancy. She does have some severe pain that she thinks is caused<br />
by <strong>the</strong> IUD.<br />
O<strong>the</strong>rs shared different experiences, “[My doctor] advised me that<br />
although he advises I do not take ANY kind of hormone <strong>the</strong>rapy,<br />
that if <strong>the</strong>y really felt I had to so, I absolutely had to be on Coumidin<br />
[sic].” Some gave more general advice, “You don’t want anything with<br />
hormones in <strong>the</strong>m—that’s <strong>the</strong> clotting risk factor” or equaled taking<br />
hormones to “play[ing] in traffi c or refus[ing to wear] bike helmets.”<br />
Still o<strong>the</strong>rs shared more dramatic experiences: “A 41-year-old teacher<br />
at my daughter’s school started birth control pills last week to help with<br />
female concerns. She died of a PE [pulmonary embolism, clot in <strong>the</strong><br />
lungs] Tuesday, funeral was yesterday.”<br />
Some concluded that everyone had to weigh <strong>the</strong>ir personal risks<br />
and preferences, “Basically, if you are using a hormonal method you