does anyone take the Depo-Provera injection? I know the pill isn't recommended for people with VHL but wanted to check this other treatment is ok
does anyone take the Depo-Provera injection? I know the pill isn't recommended for people with VHL but wanted to check this other treatment is ok
I've taken Depo in the past. I'm also not sure about the implications for VHL, which is one of the reasons I stopped taking it. The other is because it had SO many side effects! I started spotting every single day, and I've heard that from a lot of people that took it. I thought they took it off the market completely, because it was causing so many problems?
Joyce, maybe you'll know more about this? I have been wondering for a while about progesterone and tumors. I know that estrogen can enhance tumor growth, but what about progesterone? Estrogen and Progesterone have nearly opposite effects of a female's body, as far as regulating function. I've had the hardest time verifying that progesterone does not have the same effect on tumors that estrogen does. Until I find that out, I don't want to take progesterone.
OMG I have been on the pill for a skin condition and the doctors have never told me it could cause complications with VHL, this is a worry. I tried to Depo jap the last time though as I thought it would be easier and have been bleeding for 3 weeks now, will not be having that again, think I will just deal with having bad skin :(
Unfortunately I have endometriosis and since I've finished the zoladex implants and getting my monthlys back I'm in too much pain again and can't manage on pain killers so they suggested this injection which would eventually stop my periods.
I would also like to know what the impact is of taking depo with vhl. My daughter has vhl and has been on depo for quite some time now. She doesn't have the problems with bleeding or spotting. Actually no side effects at all. I do tend to think that the depo can cause some ocd's though. One daughter I have thats on it pulls her hair out one by one causing bald spots on her head. The daughter with vhl that takes depo has picked the skin off all her finger tips so bad that she doesn't even have finger prints anymore and is now working on the heels of her feet doing the same thing. Causes me to think its the depo.
I was on Depo from 1997-2005. I LOVED it for the first 5 years. I never had a period and never worried. No negative side effects.
After my diagnosis and first surgery in 2002, my sex drive dropped severely and my breasts shrank -- I figure your body changes a lot after this kind of operation and the change in response to the Depo was part of that. Eventually, I switched to the patch (also hormonal).
I recall that Joyce from the VHLFA recommends avoiding hormonal contraception. I believe that's because we don't know how altering our hormones can affect tumor growth. Since it's kind of an "elective" medication, "elect something less risky" is the thought. As soon as I heard, I started looking for a way off the hormones.
The last time I looked, I couldn't find an IUD that was both non-hormonal and MRI-safe. But that may be different now. What's a girl with VHL to do?
Try googling around or meeting with gynecologist who knows the options. Even if she does your PAP smears, many GP's don't know all the latest in birth control. My GP set me up with a gyno that was NOT in the baby business and he was awesome. I've always felt uncomfortable & rushed at the OB/GYN-- sometimes they have a very baby-centric feeling.
Since I don't want kids at all, I was really excited to find out about Essure, a fabulous female sterilization procedure that requires no incision and is done as an outpatient. Got it done in November, had brain surgery in April, all is well. I'd be happy to chat with anyone about it.
Did you already try lower hormone pills? (the pill didn't suit my life style or memory ;-) it's not for everyone )
Now, I admit it's a little strange to have my period when my body decides rather than having it regulated like clockwork as it was for years.
YIKES!!! VHL & endometriosis? ow!
Ya know what? I figure nothing is perfect and there's a chance depo could give you your life back. Try it for a while. People will disagree with me, I guess, but, like I said, there's no research on how the hormones affect the VHL. I can't see that the depo affected my VHL experience in an obvious way. If you can try the Depo, go ahead and reclaim some of your time from endometriosis.
yeah been a bit of a bumpy year.... had to have an ovary removed due to the endometriosis.
I'll check with the genetics people in sept but I think I'm gonna give the injection a go.... need to gain some freedom from pain at the mo I think. Cheers for all the advice
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