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Pulmonary Embolisms, Deep Vein Thrombosis, and Clotting Disorders - oh my!

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Factor V and birth control.
Swans
strikingyoudead wrote in thrombi_support
I know this community is basically dead but I'm hoping someone can answer this.

Does anyone here have factor V and have had a clot, but is on birth control?
I've been reading and looking around and it says that progesterone only pills don't have a risk of blood clots. Now I don't know if that is 100% true. Its basically saying that in all the scientific studies, no one developed a clot.
My first clot I got from yasmin. I didn't know I had factor V and I didn't find out till after my second clot.
I'm seeing my doctor tomorrow, but I'm just hoping that I can get some more information this way I can discuss it with him.

I used to think that because I'm a lifer of blood thinners, that I could still take the pill since the blood thinners would thin my blood enough that the birth control wouldn't clot it, but I don't think my doctor is willing to take that risk. But if the progesterone pill is doable then I'll just take that.

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I had two different doctors give me two different answers on that. The first doctor told me that yes the progesterone only pills were safe. But she was my GP. My OB/GYN said no, that they have done some studies that are finding that the progesterone only can cause clots too. She wouldn't prescribe them for me. I never asked her for the details on what studies though so I'm afraid I don't have anything concrete for you.

I am getting a iud put in on monday. They told me since my periods are so heavy with the blood thinners that a mirena iud would help slow the bleeding down. The progesterone only iud was recommended to me by a blood clot specialist at UVA.

I've thought about an IUD. But I know the copper one makes you bleed more (Which I certainly do not need.) and I am worried about my body expelling it. I don't want to go through that. Plus I still have no idea how it works. And the fact that you have a string hanging out weirds me out. (Even after lurking on IUD Divas) But let me know how it goes for you.

Yah, IUDs freak me out too. I ruled it out as possibility because of the chance of it implanting in your uterus and making you infertile. I am sure the chance of that happening is slim to none, but it freaked me out when I read it! I'm sure they're great and have helped a lot of people, but I just don't think I could do that. Also, heavier, more painful menstraution is the opp. of what I need!

i got my iud and couldn't be happier about. It went in easily and being protected against pregnancy for 5 years without worry is great. My doc told me even with the blood thinner that my periods will ease greatly and may even stop.

Just a few weeks ago, I talked to my OBGYN about possibly being on birth control. I told her I had a family history of FVL and she had me screened right away. I was positive for the results, so yes, I have FVL. I had an internal med. and the OBGYN tell me that I could not be on birth control. About a week or two later, I get a call from my docs. They had consulted with a hematologist and went over my case/options. They said that the progesterone only pills (POPs or Minipills) are safe since it is the estrogen that increases the chance of clotting not the progesterone. My doctor wrote me a RX and I went to fill it. I haven't taken it yet.. but I will as soon as I can.

I talked to the pharmacist about the pill as well. He explained how estrogen works to build up the tissue in the uterus to prepare for the baby while the progesterone is what sloughs that tissue off. Of course, he said, that's an oversimplification since there are many hormones involved in that process... but that's the extent of it .. and he did say that because of how progesterone functions it should not increase the chance of clotting. I poured through the internet and the instructional leaflet with the pill and saw NO sign that it causes clotting. It's not listed as one of the side effects in fact, it says that women usually only take the POP when a woman can't take a pill with estrogen because of various reasons (which include clotting disorders)... so yah, it should be safe.

Ultimately, it's your decision what goes in your mouth and whether it's worth the risk. I have never had a clot before, though.. so I am at lower risk, too. I trust the medical professionals I have talked to and the pharma companies for saying it's safe and am going to try it. But that's me.


On a scary note: MAKE SURE you are getting the right pill. There was somehow a mixup at my pharmacy and the WRONG RX was called in!! The pharmacist was a great enough guy that he started telling me all about the pill and how it works. Thank God he did!! Because something he said didn't sound right and I said, "Does this have estrogen in it?" He said that yes, of course it does, it's a birth control pill. I told him I could not take that.. he called the doctor back and got the right RX. I know it wasn't his fault because he just saw the slip of paper that told him to fill out the RX which he did. I don't know who called in the wrong RX but that was scary!!! He thanked me for being observant and knowledgeable on what I could and could not take. He then went over the other birth control pills and told me what to look out for. Never ever taken any birth control that has a / in it. All birth control pills have a number of dosage. If it says something like 70/100 that means it's a dual pill and has estrogen. If it just has a decimal point instead of a fraction, it's safe... like mine is .035mg. Just a hint.

Best of luck!!

Also, if you're using the minipill for birth control, then it's good to know it's not AS effective as the pill, but still more than something like condoms which is probably your next best alternative for a hormone-free birth control. It's highly highly important you take it at the same time everyday. Being off by more than 3 hours renders it fairly ineffective. :S Eek. But then you use a backup method until 48 hours after regular usage and you're good to go again. :)

Also, progesterone only forms come in IUDs and Shots. I went with the pill because it seemed less invasive. It has the least amount of side effects and is totally reversible. I don't want anything to jeopardize the risk of me being able to have children. :O)

I hope that helped! I talked to a lot of medical professionals.. asked a lot of questions.. researched.. and then made the best decision for me. Best of luck!

This was exactly what I was looking for. I see my doctor at 3:20 today and I am excited to talk to him about it. I've been using the Today Sponge (I love and hate it.) So I've been looking for more options. Thank you so much. Keep me posted!

Great story to remind us to always make sure we check what medications we get when picking them up from the pharmacy. Always double check and triple check. Check the prescription with your doctor (when they write it) to make sure you know what they've given you, and then when you pick it up, make sure it's what you're supposed to have. If you aren't familiar with what the meds are supposed to look like, I've gone as far as to look them up on drug checkers online to see what the pills are supposed to look like if they aren't in their original package. I've gotten heart medication instead of a mood stabilizer before, scared me silly.

And thanks for posting the info on progesterone only bc, I know lots of women have this question. I'm personally too terrified to touch any birth control because of all the blood clots I've had lol. I'm trying to convince the man to get snipped. >.>

Heyy..
I have Factor II and I got the clot while I was on the patch..at that point my doctors didnt know I was Factor II. I can't ever go back on it :(

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