Health Organization for Pudendal Education

Hello everyone,
I’ve made a post here before. I’ve been experiencing pudendal neuralgia symptoms since May of this year, and am currently seeking surgical treatment after nearly 6 months of conservative treatment.

What started as pins and needles in the perineum quickly evolved into stabbing penile pain, shocks of pain in the same area, shocks of pain down each side of my perineum, and shocks of pain in the glute region. I received a pudendal nerve block in July that temporarily reduced symptoms, which served as a diagnosis. I began PFPT in July, with limited success to date.

I’ve been through multiple rounds of internal and external releases, diligent adherence to my home exercise program, and have been on nerve meds with little difference in pain levels. In the beginning I would get zaps of pain with intermittent flare ups. Now it’s a more constant pain that builds throughout the day. I only get relief from laying down and sleeping. My PT is a fantastic person and is very knowledgeable, but I feel like something is being missed. I felt slight better for the first two months of treatment, which I believe was because I wasn’t working. Now I’m working again and stand for nearly 8 hours straight. I’m in agony by the time the day is over. I have a consultation with Dr. Conway in January (in person this time), and I’m terrified that he’s going to turn me away, but I’m equally as terrified of getting surgery. I can’t imagine this getting worse, but I can’t live like this. I’ve seen SOME improvements. Such as the perineum pain almost going away, but the pins and needles and penile pain is the same if not worse than it was in the beginning.

At this point, with 6 months of conservative treatment under my belt, should I pull the trigger on surgery? Especially with it seemingly getting worse. I know it’s an incredibly person decision, but I wanted to hear from people who have had surgery.

Hello J,

It's a really tough decision to make. My decision was based on several things. All of the diagnostics and my history were pointing toward a nerve entrapment, and the conservative treatments weren't working. Internal myofascial release PT was making me worse.

The other deciding factor was that I had no quality of life. A question to ask yourself is whether your quality of life is already so bad that you are willing to take the slight risk of possibly getting worse from surgery. I could easily answer "yes" to that question. If you have some uncertainty about your diagnosis and treatment options, it might be reassuring to get an opinion from more than 1 PNE surgeon if that option is available to you.

Violet

Thank you for your response Violet. I meet the Nantes criteria, and with my symptoms worsening, I believe it’s time to consider a surgical procedure. Your quality of life statement really resonates with me. I haven’t been out to a restaurant or movie since this started, haven’t seen any friends. I can barely hold down a job. I just work in pain all day, then come home and lay down.

Hi J,

It sounds like you are really struggling right now. Saying some prayers for you as you make the decision.

Violet

Hi J,

As with Violet, my low quality of life played a big role in my decision. I also had phone meetings with two surgeons, and they both concluded (based on my history and medical records that I mailed them) that I had pne, so the decision to move forward was, at that point, not that difficult. I agree with Violet that a second opinion is valuable, especially if there are uncertainties about the diagnosis.

Take care,
April

Hi J,

I am talking to Conway's office about having surgery from him in early March. All of my research has shown him to seem like a really good choice.

To what surgeons have you spoken? And when are you looking at having surgery?