January 14, 2008

Faced with a Decision

Christmas came and went and as soon as I returned to my desk at work, my pain came screeching back. Now 8 weeks into this seemingly endless flare, I made another appointment with my doctor. I was becoming extremely agitated and uncomfortable. I was losing my ability to cope.

On December 28th, I saw my doctor again, the third time about the same flare. I was angry. I felt like I was getting much worse instead of better and I wanted to know why. My doctor explained that pain is dynamic, conditions can change and they can worsen. It seemed that my pain was getting worse and it seemed that sitting the culprit. Burning pain following sex was still a factor, but nothing compared to what sitting was doing to me.

My doctor said that I would likely be a candidate for a different surgery, the pudendal nerve surgery, where the ligament that surrounds the nerve and the nerve itself are severed. This surgery is much more serious than the vestibulectomy. There is a longer recovery time and involves much larger incisions. The pudendal nerve innervates the opening of the urethra and the anus, so incontinence is rare but can result from the procedure.

My doctor told me, “you have to decide which problem you think needs to be addressed, the pain with sitting or the pain with sex.” The answer was obvious to me: I have to sit for 8 hours a day for my job. I don’t need to have sex every day. In order to continue working I must have something done. I am not interested in going on disability. I have big dreams that I’m not putting aside because of vulvodynia.

That day I got my first in a series of three injections to better determine my candidacy for the pudendal nerve surgery. It was extremely painful. I had never had direct contact on the nerve before. Sweet Jesus it hurts! My doctor had to feel around inside me to find to right spot for the first injection. When he found it, I screamed. I couldn’t help it. I was shocked by the intensity of the pain. Oh my God! Those nerves have got to go!

The needle has to puncture through the wall of the vag and then through the ligament and into the nerve. That takes a lot of force and a pretty deep prick. I shouldn’t complain too much though. Before they learned to do the injection through the vaginal wall, doctors were making injections into the pudendal nerve through the back of your legs. Can you imagine how long that needle would need to be? Good God!

After the injections, I had to wait to see if my doctor had successfully hit the nerve on both sides. He did! And for 2 days afterward all my business was completely numb except for some burning pain in my ass. No joke. I couldn’t even feel myself pee. It was weird. But it was worth it. Those injections put an end to the worst flare of my life.

I’m getting my second round of injections tomorrow. The pain has come back with sitting at work, but generally it subsides when I get home. I’m anxious to hear what my doctor has to say about the way my body handled the treatment and I’m hoping he continues to believe that the pudendal nerve surgery will work for me.


The Honorable Samantha Grace said...

I just found your blog and I really like it. I have also been diagnosed with vulvodynia. I am starting physical therapy currently for pelvic floor dysfunction and the hope is that it will help some of the symptoms.

I also have a blog about my struggles with IC, Vulvodynia, PFD, PCOS and insulin resistance. If you don't mind I'm going to list your blog on mine. Feel free to list mine as well. I feel like some of the best medicine is a good community. :)


Anonymous said...

There is no way that you and/or your doctor are understanding pudendal nerve decompression surgery correctly.

The pudendal nerve is not severed in decompression surgery. It is a mixed nerve--it carries feeling and controls function.

Vestibulectomy involves cutting off of external tissue and then pulling vaginal tissues down to cover the hole that has been created. You should talk to some women who have actually had this surgery before you commit to it, so you can understand more about the recovery and success rates.

You decide what surgery you will or will not have. Right now it sounds as if your doctor is making all of those decisions. I hope you will gather all of the information that you can.

You should look at www.tipna.org for more information.

a woman in pain said...

Thank you for the link. I obviously have a lot to learn about this procedure.

At this point, my doctor and I have not had a consultation on the pudendal nerve decompression surgery. It has only been discussed briefly as a treatment option that may be beneficial.

My understanding based on these conversations is extremely limited. This in no way reflects the knowledge or abilities of my physician.

You're right that the decision is mine, but I have a lot of faith in my doctor. He hasn't let me down yet, when so many others have. Together, I think, we will determine the best course of treatment possible.

Anonymous said...

I wasn't bashing your doctor. I was just saying that one or both of you is misinformed. In any case, most people who have PN decompression surgery get referred to somebody who does it all the time, which is probably a good thing. I do know that any surgery on the external genitalia involves a lengthy and painful recovery time. I had both this and PNE decompression and the PNE surgery was a breeze in comparison. My external surgery was to repair childbirth damage. I do encourage you to learn all you can because you might be somebody who needs both as well.

There is a lot of information to be found online and a lot of support, too.

Best of luck to you.

a woman in pain said...

Hi Celeste,

Thank you so much for replying. I would really like to learn more about your experience with surgery. I haven't spoke to any women who have actually gone through either.

Would you be willing to email me so we can continue this discussion?

I would really appreciate your guidance.

Thank you.

Anonymous said...


I couldn't find your email contact here so you send me one and we can talk.