Health Organization for Pudendal Education

Now trying pain doc Connor O'Neill who sent me for an MRN. I should have results next week. I haven't checked in for a while and I'm having horrendous pain today so I thought I had better check in.

My left post-orchiectomy testicle pain and sciatic-like pain have merged. Even tho they started so far apart in time I cannot accept that they are two different problems.

Hey, Jon. Sorry you are having a rough time right now. Have you any pain medication to help you through this flare-up while you are still in the diagnostic stage? Ice or a heating pad (or alternating) might help the sciatic pain.

Can't say for sure for you but my PNE and sciatic-type pain were definitely related. Hope the info from your MRN proves valuable.

Best,

Violet

Hi Violet,

Please tell me how the connection was made between your pelvic pain and sciatica?

I use Suboxone and Gabepentin as well as Motrin for pain.

I got the MRN report but have yet to speak to Dr. O'Neill. The report indicated (to me) some minor findings on the right side. Unfortunately my pain is all on the left side! Devastating.

I read online that Dr. Filler charges his own patients $1,300 to read their MRNs. I'm afraid to ask what he charges to read MRNs for second opinions.

Does anyone know if Dr. Hollis Potter provides second opinion MRN reads? I saw online that she also performs pudendal nerve release surgeries. I thought she was a radiologist.

Thanks - Jon

Hi Jon,
Dr. Potter is indeed a radiologist and doesn't do surgeries. As I recall, she only reads her own exams. At this point, I would consider stronger opiates or Lyrica instead of gabapentin. Maybe Cymbalta. Sharon had an unsuccessful surgery with Dr. Dellon as well and found success with an implant by Dr. Joshua Praeger at UCLA.

Don

jon wrote:Hi Violet,

Please tell me how the connection was made between your pelvic pain and sciatica?

Pain initially was pudendal related but eventually as it worsened various muscles in the pelvis went into spasm including the piriformis muscle. The sciatic nerve runs underneath the piriformis muscle so if that muscle is in spasm it can press on the nerve and cause sciatic-type pain/symptoms. I had numbness and an uncomfortable feeling in the leg/foot on the worst side of my PNE.

Violet

Sounds just like my story. Did your 2004 surgery cure all your pain, including sciatic?

Jon, the sciatic pain is completely gone on the right side -- where it was before surgery 9 years ago. It was gone within a year after surgery.

A couple of years ago I started jogging and developed some sciatic-type pain on the L side that I had never had before. It's not a major problem but if I sit too long I do get some numbness in or slightly above the left sciatic area. There doesn't seem to be a relationship between this left-sided sciatic pain and PNE pain like there was on the right side since I have no PNE pain on the left. I think probably the pelvic instability and SI joint dysfunction that I developed from weightlifting and bad ligaments is related.

I will never say I am cured but PNE pain is typically a 0-1 now, I can sit for hours with a cushion, I can work, sleep, and function well with no medication and not think of pain for hours at a time. Before surgery I spent most of my time lying down but still had average level 5 pain 24/7. If I tried to do anything before surgery like cook a meal, pain skyrocketed. So, no I am not cured but life is great compared to what it was. Hope you find some solutions that work for you.

Best,

Violet