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Birth control with Factor V Leiden Mutation

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I am currently researching birth control that I might be permitted to use even though I have Factor V Leiden mutation (1 copy inherited from my mother). I currently have a Mirena and I would be happy to stay with it if it was not for the urine leakage I am experiencing and UTIs.
Before I was diagnosed I was on Yasmin and had wonderful success with it and I felt great. I would love to be able to go back to it. Would this be an okay birth control to go back to or do you think that it is too risky? If it is too risky, do you have any other suggestions?
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First Helper user544962
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replied August 11th, 2010
No, you should definitely NOT go back to Yasmin. Not only is there a class-action lawsuit currently against the manufacturers of this drug specifically due to it causing blood clots, any kind of hormonal birth control will put you at an elevated risk of clots.
I think you should talk to your doctor about this. I am actually very surprised that he/she has you on Mirena, since that has hormones also. Your safest bet is really a copper IUD, but of course those have side effects too, but it won't elevate your risk for clots. Do a little research online before talking to your doctor, so you can be somewhat informed going into your appointment. Good luck!
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replied October 27th, 2010
I agree with Penguin. I loved Yaz but it almost killed me, literally. I am hetero FVL and homo MTHFR C677T. I had multiple (12+) DVTs in one leg and 2 PE's all at once that put me in the hospital. I was offered the Mirena IUD but due to the cost and a bias against IUDs (family infertility issues due to it) I chose not to. I sorely miss the pill as I have PMDD and it made my life so much better emotionally, but physically I almost died.

Also, it's not about being too risky, its that once your doctor knows you have FVL, they WILL NOT prescribe birth control pills.
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replied November 8th, 2010
PCOS and Factor V Leiden
There seems to be a lot of confusion on this subject. I have been on birth control pills for over 20 years, because I have irregular periods. Without the pills, I don't have a period. Recently found out that I have Factor V Leiden. My family doctor and endocrinologist are of the opinion that I should never take birth control and will not prescribe it. My ob-gyn says that I need definately need to menstruate, and prescribes YAZ (what I have been taking for the past few years). My hematologist says that he doesn't reccomend it - it will increase my risk, but he is not adamently against it. I'm told my choices are to take the pills and be at higher risk for a clot or don't take the pills and be higher risk for endometrial cancer. YAZ has always worked really well for me, so that is what I decided to go with. My ob-gyn said there were some bad studies done in Europe on YAZ, and that's how it got such a bad name as of late. I'm going with her opinion. She stated that it was more dangerous for me to have a baby than take birth control pills, and no one would have the audacity to tell me I shouldn't have kids. Not discounting what other people have gone through with blood clots, but sometimes the pills are the only feasible alternative. I've been going to doctors for over 20 years and have had countless amounts of blood testing, and this is the only solution I really have. Just throwing it out there in case anyone else is on the same boat.
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replied November 26th, 2010
Yaz v. IUD
I am Factor V Leiden (heterozygous) also. And I am slightly confused by LeidenBlues comment. I was recently diagnosed with this and prior to that I was taking the oral contraceptive YAZ very successfully. The problem with YAZ is that it is a two part hormone...both derivatives of estrogen and progesterone. The estrogen is what elevates the risk for blood clots. My OB told me to stop YAZ immediately. YAZ increases the risk for blood clots in normal non Leiden individuals, but for those who do have Factor V it puts that risk at unacceptable levels. My OB then suggested the Mirena IUD because it only uses a low does progesterone derivative and there for doesn't have the clotting complication. Im no doctor, but my OB seemed very adamant that because of the Factor 5 that any estrogen based hormone would be very dangerous for my health. I would be careful, she told me my chance for a heart attack or stroke is almost double that if I was not taking it. It also depends if you are heterozygous (from one parent) or homozygous (from both parents)...homozygous shouldn't take any hormone supplements at all. I have not yet gotten the IUD implanted, and I would be interested in any personal experiences with it. It slightly concerns me. I'm worried about the procedure and the fact that it doesn't actually prevent ovulation. Any advice would be welcome.
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replied December 2nd, 2010
progesterone-only pill
I am heterozygous for the factor V leiden mutation. I got tested when I was researching birth control. For about 2 years now I have been on a progesterone-only pill. Before getting on the pill I was extremely regualar. However, on the pill my period does not stop. I knew breakthough bleeding was a side effect, but only for about the first 3 months. I kept with it, but no improvment until I came off the pill and my period went right back to normal. Unfortuantely, being on the pill helps with period cramps more than being off so I am back on and my period has not stopped since about September (3 months). I have an appointment coming up to discuss the risks of moving to estrogen (I'm hoping that will keep it regular). But I just wanted to say that being a heterozygous, multiple doctors had no problem putting me on a progesterone only pill, which is just about as effective for birth control as the typical estrogen pill. So that is something to consider talking to your doctor about too. However, for me, I hate being on it, but only because of the side effects (my period never stops). Perhaps it would be different for you.
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replied May 18th, 2011
FOR THOSE WHO HAVE BOTH FACTOR 5 LEIDEN AND PCOS
i have factor 5 Leiden and pcos and after a discussion with both my doctor and a specialist, i was told that the pill is dangerous for me to take because my blood could clot (because of the estrogen in 'the pill' which is the dangerous, blood-clotting part) and that the other hormone called progestogen was a possibility if we were careful in how i take it.

**The pill is made up of both estrogen and progestogen.**

I was recommended the 'mini pill' because it only has progestogen and no estrogen.

Unlike some other forms of taking progestogen such as the injection and possibly the merina (excuse the miss-spelling) the progestogen is released in a very low dose and because it's daken daily, the hormone is obviously released gradually into your system, opposed to getting a large 'hit' of it, therefore making it safer than other ways of taking progestogen.

For those two reasons, it was decided by the specialist and doctor that this was the 'safest' option for me for birth control provided i'm monitored every three months but is by no means completely safe.

I hope that helps clear that up.
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replied September 10th, 2012
ITS CALLED RESEARCH PEOPLE
I am sorry but all who keep posting have me confused. After finding out I have Factor V Lieden while pregnant with bilateral PE's and a collapsed lung my 3 high risk specialists and pulmonologist all stated clearly: "do not use ANY form of birth control that utilizes ANY hormone". All of you who keep saying no big deal, blah blah blah...I would rather live. If I had to have a partial hysterectomy to ensure that my PCOS, PMDD, or Cancer risks did not change then I would HAPPILY give up my uterus for my life! Maybe you should look at any and ALL hormonal contraceptive website for the contraindications that CLEARLY state if you have had or are at risk for having a blood clot do not use them...if you smoke and/or are older than 35 your risk for a blood clot increases with the use of ANY hormonal contraceptive and that only ADDS to your increased risk from Factor V Lieden...and if you are HOMOzygous for FVL then you OUGHT to be on a blood thinner or aspirin daily for life, cannot have children much less use birth control because you can get a clot from your own naturally occurring hormones in your body...PLEASE people research the diseases you are diagnosed with (if you want to live that is)
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replied April 11th, 2013
I agree with user544962. I am heterozygous for Factor V Lieden. I was tested a year after my sister was rushed to the ER, complaining about excruciating chest pain and extreme trouble breathing. Not only was she coughing up small amounts of blood, but she was unable to breathe. Doctors quickly realized she had blood clots in her lungs. After running multiple tests, they realized she was positive for Factor V. She was immediately put on blood thinners and was taken off of her birth control prescription for Tri-Cyclen Lo, an already low hormone birth control pill. I highly suggest that if you are susceptible to blood clotting of any kind, especially those diagnosed with Factor V, to take precaution with birth control methods. It nearly took my sister's life and it's foolish to use any form of birth control that includes any type of hormone. There are other forms of birth control that are just as effective and that won't harm your health, such as Mirena.

Do your research about the disorders you are diagnosed with. Life is such a precious gift and you do not want to impact or lose it to naive mistakes.
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replied July 6th, 2013
I am reading al of this and I agree do your research. I am FVL homozygous and I have PCOS (diagnosed at 1Cool I am about to turn 37 and my daughter is almost 11 years old (she is heterozygous). I have had 4 pregnancies in my life and only the first survived. I have never had a clot and I do not take aspirin daily or any other thinner except when pregnant or after surgery ( I have had, tonsils removed and gall bladder removed, plus 3 curates from miscarriages). I struggled to conceive due to PCOS and inquired about IVF. I was told they would not risk my life for another baby and when I asked about aspirin I was told I may as well take a tic tac. I eat well, do not smoke or consume alcohol and touch wood I am ok. You can get pregnant, have babies and be ok, as for contraception, if need be use a condom or diaphragm, I will not have a hysterectomy as I can not have hormone replacement. My husband is planning to have a vasectomy as he will not risk my health.
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