Thursday, January 3, 2013

R's Story: Vestibulectomy, Clitodynia, and Small Successes (Guest Post)

Another guest post!  R's story includes a good helping of the words I would call "vulvodynia buzzwords" if vulvodynia had any buzz: she discusses pelvic-floor muscles, physical therapy, her two vestibulectomy surgeries, pudendal neuralgia, clitodynia, nerve blocks, lidocaine, tricyclic antidepressants, painkillers, estrogen cream, steroid cream, and loads of persistence -- a story that starts when she was 13 and continues today as she and her doctor move closer to the right treatment for her pain.  Thank you for sharing, R!!

Click here for all guest posts (4 total now -- woo woo!).  If you'd like to share your story, please email me at madpeachblog at gmaildotcom.  Email me also if you have questions for a guest!

R's Story

I've been dealing with severe vulvodynia/vestibulitis/pelvic floor muscle spasms/clitodynia for about 8 years now. I've always had trouble with tampons since I was 13 and sex has always been painful. It's always felt sore, like there are paper cuts all around the opening that lasts for days. Around the time I was 19, I started getting what felt like recurrent yeast infections. It was actually my vulvodynia getting worse; since I was so inflamed and irritated, the slightest amount of yeast in the culture at the GYN's would warrant a prescription for a strong anti-fungal.

I was also seeing my now-husband at the time, and he would drive up to visit every other weekend. Since we would have sex throughout the weekend and then be apart for two weeks, I thought that I was just sore from the weekend. By the time I felt less sore, he would come visit again and then I would be back to being in pain after sex. That year, I asked my GYN about it and talked about the paper-cut feeling. She prescribed an estrogen cream that's supposed to help with the hormone levels and make the tissue a little stronger. That didn't work. Next was a steroid cream, intended to do the same thing as the first cream. No luck with that either. Next was a low-dose tricyclic antidepressant - I get the concept, that the drug is supposed to calm the nerves down there, but I couldn't help but feeling crappy, that my vagina was "depressed". Coming back to the office after the creams and medicine didn't work, I had that terrible conversation with the doctor many of you are familiar with; when they say, I don't know what's going on with you.......I don't know what else to do for you.

Then my GYN sent me to a specialist, who is the best-of-the-best in this field in the northeast. He did a Q-tip test and I struggled to stay on the table I was in so much pain. He felt that I looked like a pretty typical case of vulvodyina, and wanted me to try physical therapy and a baclofen cream to help relax the muscles.
My physical therapist is amazing. I've seen her for over two years now, and she's still willing to try new things and has been there every step of the way. Although I felt like PT helped, it was hard at first to get used to using dilators on my own and practicing the techniques to help relax the muscles at home. I'd get so anxious about doing the exercises because I knew it was going to hurt that it made my pelvic floor tighten up and then I'd be in pain anyways. So then I went back to the GYN specialist and he wanted to try the vestibulectomy - essentially removing the tissue and nerves around the vestibule that were causing me so much pain.
A few months later I went through with the surgery, and after about five months of recovering, I was finally starting to feel better - not cured, but the pain was more manageable, at least not as bad as before the surgery. There was still significant pain at the areas where the incisions/stitches ended on either side of the vestibule, and I kept coming back to my specialist with it. He wanted to exhaust every other option before thinking about a secondary surgery, so we were back to tweaking the anti-depressants, trying different cushions to sit on, and continuing with physical therapy. Although the area where the tissue was removed from the surgery was now pain-free, the two areas where the stitches ended were where the pain had migrated to. My doctor had explained that this might happen before I had the surgery, but at that point I figured I might as well go through with it, what do I have to lose. To this day, I'm still glad I had the surgery, because it did help with the pain in that area.

After trying everything else again, the doctor decided that I would need a second vestibulectomy to fix the scarring and newly painful area of each side of the vestibule. This surgery was slightly easier in the sense that I knew what to expect, but also harder because I knew what to expect. Now I knew what the recovery was like, and not knowing if this was going to be "the cure" ate away at me every day. The surgery went well, although the recovery was much longer this time, close to eight months.

As I continued to recover, I noticed that the pain was non-existent in the vestibule area, but one day I had a sudden onset of clitoral pain. It was horrible and embarrassing and awful all at the same time. Down there felt aroused but my mind wanted nothing to do with it. All. The. Time. I got an appointment with my primary GYN that day, and I felt like I had a kidney stone stuck in my urethra/clitoris. It's kind of hard to pinpoint pain down there. The nurse couldn't see anything and said I "looked fine" and sent me home with advice to put ice on it, drink lots of water, and take some advil. Which did nothing. I remembered what my doctor said about the pain "migrating". This is what my vulvodynia had now manifested in: clitorodynia due to a pudendal neuralgia diagnosis by my specialist. This was in the summer of 2011, and I've had the same clitoral pain consistently since then.

Since then, my pain management has consisted of topical lidocaine creams, valium suppositories (to keep the muscle spasms from coming back), various seat cushions for every possible place I sit in my car, at work, at home, etc., ice packs when I get home, and percoset. My specialist suggested that in order to break into the pain cycle, my muscle spasms would need to be addressed. He thought that if we could stop the spasms, it could possibly release the nerves being trapped, and then I would be able to get a break from the pain. In order to get relief from the spasms since I couldn't control them, he would need to do Botox injections to my pelvic floor muscles. I went through two rounds of the botox injections, and they helped for about three months, but then the botox wears off. Lately, I've tried CT-scan-guided nerve blocks which go in through your buttocks to try to keep the pudendal nerve from firing pain signals all the time. After two rounds, the only part that was successful was the anesthetic part of the injection, which wears off after 24 hours (the part of the injection that's supposed to stay in your body longer/effectively hinder the nerve is the cortico-steroid).
So, my doctor is going to do another round of the botox this week and a more localized nerve block to help with the clitoral pain. Hopefully this works, I'm getting tired of being on painkillers all the time, and this has all started to wear on my husband. Bless his heart, he's been amazing through all of this, and he even proposed to me when I was at my lowest, when the pain was the worst. I can't blame him, he's getting worn out from me feeling down about it all the time, needing ice packs, and to lie down when I get home from work. I'm trying my best, but I can't help but feel guilty when he gets home and I can't even eat dinner with him at the table. I know that most of the information on the internet is negative when it comes to vulvodynia, and I hope this doesn't sound like one more; I wasn't sure what I wanted to do with my story, how it would help others, or if it even would. I think it helps to put your story out there, to just talk about it, even anonymously, since this isn't as easy as complaining about neck or back pain for us - it's much harder. I don't know where I'll end up in my journey with this pain, hopefully it gets easier or more manageable, but I know I've learned a lot about myself and the family and friends I can count on along the way.

Good luck and positive vibes to all of you out there struggling with vulvodynia - I hope your journey gets easier someday too.


  1. I've been googling all night and there isn't much info out there about women having this pain. I'm glad I found your blog. I've been experiencing a painful, itchy, stimulated clitoris... And ive read a few posts about other women ( very few) experiencing similar pain, but no one is able to find the cause. Thanks again for your blog

    1. You're welcome! I don't have the itch, but I do have "clitodynia," painful clitoris... I'm currently using lidocaine a few times a day to see if it reduces the sensitivity over time. It really takes a crap on my libido! I wish you luck in finding the answers your need, and I'm glad I can help.

  2. thanks for these posts! do you mind sharing who are the specialist GYNs you've seen and which you'd recommend on all this? (i'm nyc)
    thank you!

  3. Thank you for sharing. I understand the hardship. 6 plus years of vv..I too have a partner of 4 years who is kind hearted to accept me with my flaws but the guilt of not having sex/or having to see me wince in pain during the act does affect our relationship. I am so sorry your surgeries did not work out, my eyes teared up reading that. So hopeful, and yet it was not to be. I hope you have found relief Esther. God bless you.

  4. Hi, Reading through your story, I feel like I am reading my own... Apart from the clitodynia. I have had similar sympthons, always pain with sex and after 15 years of trying excersises, creams and everything else I got a vestibulectomy last year. However now almost a year later I still cant have sex as I now have a batholic cyst as a result from the operation. The pain is that they cannot remove it as it only comes up with I am aroused, also the scaring is painful and I still have the spasms. It really feels like an endless story and not sure what to do now but I heard Castor Oil is good for massage remedies so I am going to try that. Anyway thanks for sharing your story... it is so hard because you cant be open about it and it no one really understands what is going on. Wishing you all the best