vulvoldynia/pelvic pain

mom · 06-16-2012, 09:52 AM

I mentioned this under "Medications", but wanted to create a specific thread on this issue. My daughter (now 20-diagnosed with PCOS at 16, and a thin cyster) has recently developed issues with some pelvic pain (vulval burning, etc). After talking to a lot of people, it sounds exactly like vulvodynia. I had a disturbing phone consult with a doctor who is located quite a long distance from us, and he said that he felt sure that she had vulvodynia and that it was most certainly caused by her PCOS treatment (birth control pills and spironoclatone). He said that we were basically destroying her female organs. I of course realize that this is quite a big statement, since he has never even seen my daughter and it makes me feel very cautious of him (he really made an effort to convince us to travel to see him). He said that she was gong to have to chose between treating her PCOS and saving her female organs.

So, my question to everyone is, is there anyone else who is taking birth control pills and/or spironolatone who had developed any sort of pelvic pain issues?

amy26 · 07-02-2012, 11:14 PM

Hi there, is there any treatment difference between a thin PCOSer and us "big girls"? That doctor is very brazen to actually give you advice like that over the phone without actually seeing your daughter. I would be very weary.

I personally have very very high testosterone levels and my doctors have not put me on anything to lower it. I find that metformin is enough for me... but I know it doesn't work for all people. I do get some pain either right before my period or when I'm ovulating that feels like sharp stabs in the region of my ovaries but that's about it.

My most recent reproductive endocrinologist did want me to start taking birth control for my PCOS but my body just does not like birth control. I have had bad experiences with it when I was younger and most recently my doctor tried to put me on Nuvaring and it gave me the worlds most God awful back pain I've ever felt and I couldn't take it more than a week before I had to remove the thing.

I do remember when I was in my 20's and taking birth control pills they gave me similar symptoms to a vulvodynia type of situation. However these symptoms were usually after I had sex. Upon stopping the BC, I haven't experienced these problems since.

If it were me, I would go off the BC and the other drug and just see if those problems went away. Not trying to tell you what to do but just what I would do. For me, the PCOS symptoms would be managable if I could rule out the other things going on that you described.

mom · 07-05-2012, 08:19 AM

Thanks for your input. I think we might be finally on the road to getting help for my daughter. We saw a wonderful pelvic pain specialist in PA. My daughter was diagnosed with Interstitial cystitis, vestibulitis, and PGAD (which we were already aware of). It is very easy to believe these diagnosis, because I was there for all the physical exams and saw the pain my daughter felt with certain light touches. The muscles of her vaginal wall are so tense, they are very hard and painful to light touch as well. She has neuropathy of the left pudendal nerve and this is causing her nerves to kind of go crazy in the pelvic region.

This doctor does not believe that her PCOS treatment is responsible for her issues. He has a very reasonable plan set to treat her pain. There is no cure for the things she has yet, but the dial on the pain can be turned down and with physical therapy, it is possible to get those muscles in the vaginal wall to eventually relax. My daughter is thrilled to understand what is wrong with her and looking forward to working on getting better.

amy26 · 07-07-2012, 11:25 AM

Sorry to hear that.... my mother has IC actually... for about the last 25 years. If you have any questions let me know and I can ask her for you.

mom · 07-07-2012, 11:55 AM

Thank you so much! I'm sure we will end up having questions along her journey to feeling better. It is great to know we have someone to ask!

06-16-2012, 09:52 AM	#1
mom Senior Member Join Date: Apr 2008 Posts: 122	vulvoldynia/pelvic pain I mentioned this under "Medications", but wanted to create a specific thread on this issue. My daughter (now 20-diagnosed with PCOS at 16, and a thin cyster) has recently developed issues with some pelvic pain (vulval burning, etc). After talking to a lot of people, it sounds exactly like vulvodynia. I had a disturbing phone consult with a doctor who is located quite a long distance from us, and he said that he felt sure that she had vulvodynia and that it was most certainly caused by her PCOS treatment (birth control pills and spironoclatone). He said that we were basically destroying her female organs. I of course realize that this is quite a big statement, since he has never even seen my daughter and it makes me feel very cautious of him (he really made an effort to convince us to travel to see him). He said that she was gong to have to chose between treating her PCOS and saving her female organs. So, my question to everyone is, is there anyone else who is taking birth control pills and/or spironolatone who had developed any sort of pelvic pain issues? __________________ mom

07-05-2012, 08:19 AM	#3
mom Senior Member Join Date: Apr 2008 Posts: 122	Thanks for your input. I think we might be finally on the road to getting help for my daughter. We saw a wonderful pelvic pain specialist in PA. My daughter was diagnosed with Interstitial cystitis, vestibulitis, and PGAD (which we were already aware of). It is very easy to believe these diagnosis, because I was there for all the physical exams and saw the pain my daughter felt with certain light touches. The muscles of her vaginal wall are so tense, they are very hard and painful to light touch as well. She has neuropathy of the left pudendal nerve and this is causing her nerves to kind of go crazy in the pelvic region. This doctor does not believe that her PCOS treatment is responsible for her issues. He has a very reasonable plan set to treat her pain. There is no cure for the things she has yet, but the dial on the pain can be turned down and with physical therapy, it is possible to get those muscles in the vaginal wall to eventually relax. My daughter is thrilled to understand what is wrong with her and looking forward to working on getting better. __________________ mom

07-07-2012, 11:55 AM	#5
mom Senior Member Join Date: Apr 2008 Posts: 122	Thank you so much! I'm sure we will end up having questions along her journey to feeling better. It is great to know we have someone to ask! __________________ mom

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07-02-2012, 11:14 PM	#2
amy26 Member Join Date: Nov 2010 Location: Northern VA Posts: 74	Hi there, is there any treatment difference between a thin PCOSer and us "big girls"? That doctor is very brazen to actually give you advice like that over the phone without actually seeing your daughter. I would be very weary. I personally have very very high testosterone levels and my doctors have not put me on anything to lower it. I find that metformin is enough for me... but I know it doesn't work for all people. I do get some pain either right before my period or when I'm ovulating that feels like sharp stabs in the region of my ovaries but that's about it. My most recent reproductive endocrinologist did want me to start taking birth control for my PCOS but my body just does not like birth control. I have had bad experiences with it when I was younger and most recently my doctor tried to put me on Nuvaring and it gave me the worlds most God awful back pain I've ever felt and I couldn't take it more than a week before I had to remove the thing. I do remember when I was in my 20's and taking birth control pills they gave me similar symptoms to a vulvodynia type of situation. However these symptoms were usually after I had sex. Upon stopping the BC, I haven't experienced these problems since. If it were me, I would go off the BC and the other drug and just see if those problems went away. Not trying to tell you what to do but just what I would do. For me, the PCOS symptoms would be managable if I could rule out the other things going on that you described.

07-07-2012, 11:25 AM	#4
amy26 Member Join Date: Nov 2010 Location: Northern VA Posts: 74	Sorry to hear that.... my mother has IC actually... for about the last 25 years. If you have any questions let me know and I can ask her for you.