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I have multiple cysts in my liver. I am also on the birthcontrol pill which can cause cysts in the liver. How do i know if the liver cysts/tumors are caused from VHL or the birth control pill. Should a woman stop taking the BCP if cyts are forming in her liver?
Cancer Thrombophlebitis Acne Heart attack Stroke Pregnancy Skin cancer
I'm definitely not qualified to answer those important questions, but I can tell you our 16yr old son already has liver cysts. Did your cysts appear after you began birth control pills? Personally, I'd tend to think the cysts are VHL related, but I'm not a doctor. Be sure and discuss your concerns with your doctor. Robin Kadlecek
Hi Robin,
I have been on the pill for a long time. Obviously i went off the pill when i became pregnant. After my preganancies i went back on the pill. After my husband had a vesectomy, i went off the pill permanently. To my surprise, i developed alot of hormonal symptoms: acne on my back and painful, bigger breasts every 2 weeks before my period. It wasn't until my early 30's that cyts started showing up in my liver. I'm now back on the pill to control the acne, and i am certain i have read that the pill can cause cysts in the liver. My last MRI said i had a few small cysts in the liver. MY current MRI now says "multiple cysts." Did starting back up on the pill last summer take me from "a few small cysts" to "multiple cysts", or is it all VHL related??? Just how common is it for VHL patients to develope cysts in their liver? Makes me wonder:)
hi robin,
i too have cysts on my liver, caused by VHL. although i'm not a doctor, i suspect the cysts are from VHL, and not from birth control pills.
regards,
raeanne
Some information i found about the birthcontrol pill:
The addition of hormones into the body will make certain tumors grow faster, thus anyone with a known or suspected cancer should not take the pill. It is important to note that the pill decreases by half the risk of cancer of the ovaries and the endometrium. The effects of the pill on skin cancer and cancer of the cervix are not clear.
Women who have had liver damage should not take the pill. The pill causes a small increase in rare tumors of the liver.
Risks of BCPs
Aside from a number of minor, but annoying, side effects, serious risks of BCPs are limited, for the most part, to cardiovascular problems, including stroke, heart attack, thrombophlebitis and thromboembolism.
These complications are very rare among women under age 35 who are non-smokers, and the added risk of BCPs is difficult to measure and probably insignificant.
For non-smokers over age 35, the increased risk of cardiovascular problems among BCP users is measurable, but extremely small and certainly less than the risk of pregnancy.
For smokers under age 35, the increased risk of cardiovascular problems among BCP users is measurable, but extremely small and certainly less than the risk of pregnancy.
For smokers over age 35, the increased risk of cardiovascular problems among BCP users is very significant, and so high as to make such use ill-advised in any but the most extraordinary circumstances.
There is also a very small, but measurable increase in the risk of liver tumors and cysts.
I passed this question to our medical advisory board. The doctors at the NIH have not seen livery cysts associated with VHL. Their feeling is that you should work with your gynecologist to unravel this.
Best wishes,
Joyce
Thanks for checking with the medical advisory board. Would you be able to get information from NIH's gynecologist about women with VHL, especially woman with tumors in all organs (including kidney, pancreas and adrenal tumors) if there is any risk affecting tumor growth from taking the birth control pill. I'd really like a gynecologists opinion who is very familiar with VHL tumors.
Hi Joyce,
Hope you are well!
What about hemangiomas in the liver? Could they appear as a blood vessel fed cyst? Just wondering...
Thanks,
Tina
Good question, Ballroom Dancer. We have been asking for exactly this kind of input for years, but the NIH VHL team does not include a gynecologist. We tried to get some perspective on APMO's (benign cystadenomas that occur in the female reproductive tract) from that study, and until the last 1-2 years, they were not even scanning that area of the body of their patients. So they do not have any useful data on the prevalence of APMO's either.
I would suggest you focus your question with your own gynecologist on the issue of the liver cysts being formed by this drug. You can tell your gynecologist that you have inquired whether this might be related to VHL, and that the largest VHL study group in the world says they have never seen cysts in the liver associated with VHL, so they have passed you back to gynecology for answers.
There should be information from the pharmaceutical company about why this occurs, how frequently, and what to do when it is seen. They put it in the warnings on the label, so obviously it has happened to others before.
One bit of feedback we had from one endocrinologist was that this should not cause liver dysfunction (whew!!) but nonetheless I would get it checked out and go back to the pharmaceutical company for advice on how to handle the situation.
As for your larger question whether it is okay for a woman with tumors in multiple organ systems to take birth control pills, I can tell you that we have decades of experience with them and while there is nothing dramatic to report, there sometimes are reports of accelerating tumor growth. But then women of child-bearing age are in the age group when tumor activity is probably highest anyway. Was that accelerated growth due to the pills? or would it have happened anyway? Impossible to know without a very large study that would take so long and be so expensive it will probably never happen.
we have lots of "anecdotal evidence" (patient stories), but they don't help us differentiate. You would have to have at least 100 women, matched in pairs so that they have similar ages and levels of VHL affect, and half of them take the pill and half of them never take the pill, and carry on that study for 10 years. There would have to be some allowance for how many of those women had babies or not as well. At the end of the 10 years we tally up how many tumors occurred in those 100 women and compare the statistics for the two groups.
Meanwhile, the most important thing is to be watchful -- even a little more than usual, but nothing dire.
Best wishes,
Joyce
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