Vaginal Cuff Neuroma Post-Hysterectomy?

Hi, everyone. I've just found this site, and I am really hoping that someone out there might have had an experience similar to mine. (What I'm REALLY hoping is that someone has had this experience, and has found a successful treatment other than being on pain meds forever!)

I had a hysterectomy, with just my uterus removed, in Sept. 2001. Opted for an abdominal incision because, ironically, I feared that removing my cervix in order to remove the uterus vaginally would result in less sexual sensation for me. (I say "ironically" because now we only have sex around once a month, with both of us knowing that I'm going to be in agony for days afterwards if we do it - either with intercourse or not. If I orgasm, I end up in pain. (It doesn't hurt to have sex - bad pain starts an hour or more later.) ANY activity which uses my pelvic muscles makes my pain worse. I have quit my job, and try to spend most of my time lying down. The pain is still present when I lie down (with a heating pad, of course), but if I rest for three days or so, the degree of pain greatly decreases. I CAN'T LIVE LIKE THIS, THOUGH.

I am going to a new gynecologist who has just opened up a pelvic pain center in Baltimore, and he has suggested that my symptoms might be from a vaginal cuff neuroma as a result of the hysterectomy, though of course he said he'd need to examine me to be sure. I've been living in constant pain for more than two years now, and am basically an invalid. I'm 41 and I have a handicapped parking sticker, for goodness sake!

Anyway, I'm wondering if any of you had the VCN problem after having a hysterectomy, and whether you were able to obtain long-term relief. I'm also wondering whether this is something that can be permanently fixed, or if it's something I'll have for the rest of my life.

Thanks for listening, and for any info you can share about this! (And any thoughts about what the problem could also be, such as adhesions, maybe, would be most appreciated.) FYI, I have never felt like I healed from the surgery, though obviously I have healed by now. I've just probably not healed properly!

Judy

Dear Judy,

I am sorry you are having so much trouble. I am glad you found a pelvic pain center. Hopefully that doctor can help you.

I am confused a little with your post. If you still have your cervix than you do not have a vaginal cuff... you get that when they remove the cervix. That said, I had the TAH (incl cervix) and was later diagnosed with a vaginal cuff neuroma by a pelvic pain specialist. I did not have the same symptoms that you mention. Mine was terribly painful to touch so was painful during sex. The pelvic pain doctor I saw said that he treats them by injecting them with some sort of freezing agent... neuromas as he told me were like little abcesses on the end of the nerve... so the freezing causes them to die off I guess.

I am wondering if you are having trouble with your pelvic floor muscles (Spasms etc.) . That can wreak havoc I know. It can also cause painful intercourse and pain afterwards. Hopefully the doctor at the pelvic pain center is knowledgable about that aspect too. Be sure to check into that and either have it ruled in or out as a problem... PT can be helpful for that.

By the way... another doctor thought that I might have endo on my vaginal cuff and another thought it might be adhered to something thus causing the pain. So far I do not know what the right answer is.

I hope you find an answer and some relief.

Keep us posted.

Sarah