Health Organization for Pudendal Education

I'm not even sure it's pudendal neuralgia. The diagnosis was made by my neurologist after he pricked the skin at several locations around my pelvis along with my history. What I don't understand is the range of symptoms and how they move around and vary throughout the day.

Originally the pain started in my left testicle and eventually start a random circuit of moving from my testicles, perenium, buttocks, lower back, and abdomen. As of the last year I don't get the testicle or perenium pain often, but I'm constantly dealing with the lower back, abdomenal, and buttock pain.

Granted these changes have allowed me resume some of my life's prior activities, but the change isn't enough to have benefited my mental welfare.

I fear I'll never be out of pain and the anxiety and depression will be a permanent fixture in my life. I don't see a hole lot of people posting with 20 years duration and hardly any data to support that it goes away so not sure where those people are.

Anyhow I'd like to get a solid diagnosis so at least I know what to pursue and so far what needs to be done to secure that diagnosis has escaped me. Also pain management is near nonexistent in my area of the country.

I had a lot of other symptoms develop over time with pudendal neuralgia and I think it was because there was more going on than just PN, including sacroiliac joint dysfunction (can cause lower back pain), buttock pain from piriformis syndrome related to pelvic instability and misalignment from ligament strain. So I think it's entirely possible more is going on with you too. Have you been evaluated by a good PT or manual therapist?

Violet

I was evaluated by in Fall 2013 by a therapist who thought my muscles were tight. Unfortunately stretching and trigger point injections didn't benefit me. Even with aggressive stretching I could not lengthen the muscle fibers.

I had to use a TENS unit for a couple of hours a day to get the rest of the muscle tension worked out after my PNE surgery. I also had some prolotherapy injections to strengthen the ligaments. Sometimes it's a matter of trying different therapies and treatments until you find what helps. I do understand the part about it hitting your wallet though. I spent almost $20,000 for my trip to France for surgery but it was worth every penny. Eventually you will find the right treatment and it will have been worth it. There is always the option of trying mindbody therapy as described by Ezer on this forum and that would be free. It doesn't work for everyone but may be worth a try.

Violet