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Shrunken genitals right after hyst, no sex drive since--why? (long)From: ann (anonymous@obgyn.net)Sat, 5 Aug 2000 16:01:40 -0500 (CDT)
I'd be VERY grateful if someone can help me with info here--I have a referral to a neurologist, but can't get in to see him for 8 weeks. Sorry this is so long, but... Here's the background: Pre-hyst. I had a fairly high sex drive. Total vaginal hysterectomy (kept ovaries) for fibroids in November 1999. Surgery was in the morning; in the evening when I first tried to urinate I noticed that my vulva seemed pulled in and shriveled. This seemed odd, but at the time I was worrying about other things, figured it was cosmetic only (there was no pain, numbness or tingling), so I didn't think to ask my dr. about it. Fast forward 6 weeks to sex, at which point I found that my vulva just didn't work anymore--while arousal (e.g. from nipple stimulation) still caused vaginal engorgement/lengthening etc, even direct stimulation of the area around my vagina had no effect whatsoever. I can still have an orgasm from clitoral stimulation if I work really really hard at it, but the orgasm itself is about as enjoyable as a sneeze, and doing all the work to get there is not something I feel any desire to do except as a research project. For the last 6 months I've been trying hormones. Estrogen "plumped up" my labia, returning them to their pre-hyst size, but had no effect on the lack-of-engorgement problem. I tried testosterone, upping the dose until I had acne and hair loss and crankiness. Still no effect. So I've come to the realization that *something* happened during surgery that broke my vulva's normal sexual functioning, and that that area is essential to my experiencing a sex drive. But what? Neither my gynecologist/surgeon nor the vulvar specialist he referred me to was much help--they say that they've never heard of anything like this happening, and that it seems very odd since the cutting for a TVH goes on far away from my problem area. And the discussion pretty much bogs down there. So, if any of you are willing, please take a conceptual leap here--take as a given that it happened, and please share with me your reasoned opinion/speculation/most likely guess as to how it might have happened, if it's analogous to any cases you know of, and/or what I can expect as a prognosis. Some more data: 1. My labia really did shrink (by about 2/3). Post hyst (but pre-estrogen), I was finding that, when I urinated, they were no longer big enough to channel the stream, which tended to trickle onto my leg. This had never happened pre-hyst (and doesn't happen now) 2. I caught herpes 20+ years ago, and pre-hyst I had frequent outbreaks, mostly on my [inner] labia. One of the things I noticed to my delight a few weeks post-hyst was that my outbreaks had stopped--and, since the one that came the day after the hyst., I haven't had any on my labia. Have had them in other pre-existing outbreak places, AND got one in a brand new place, lateral to my labia. The first new spot in 15 years. 3. It seems that the problem isn't with sensory nerves--I discovered last week that if I repeatedly contract my vaginal muscles, it has the effect of pumping blood into my vulva--and then, a little bit, I *do* feel the sensations that I haven't felt since last fall. 4. My doc. says that the retractors were held by hand, and moved around during the surgery, so they weren't pressing on one place the whole time. 5. The symptoms are bilateral. (and 6. I have a PhD in biology, I'm not looking for comfort, I'm looking for truth (or as close as we can get here)) So-- If you had to hazard a guess as to what happened, what would you say? Weird innervation patterns that resulted in essential nerves passing through the uterine area? Crushed/cut blood vessels? Some abnormal autonomic response to the general trauma of surgery? Given whatever cause you consider most likely, what is the likelihood that it will regenerate over time? (I know that sensory nerves grow back, but what happens with men whose nerves are severed during surgery for prostate cancer--do they ever get their sexual functioning back? what about women with episiotomies?) What resources are out there on the physiology of female sexual response? Sorry about so many questions--any answers, to any of them, would earn my sincere gratitude. wish I'd gone with the UAE that my doctor talked me out of, saying "there's on info on the long-term effects". Arggh. Thank you-- Ann
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