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LeighO57 (@leigho55)

Anyone out there diagnosed with Pudendal Neuralgia?

Chronic Pain | Last Active: Oct 18, 2022 | Replies (137)

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To be honest I was having pain for quite a few years, misdiagnosed by my regular gynecologist, referred to a specialized gynecologyst who did a biopsy of my genital area and I have an autoimmune disease called lichen planus… He thought that was the answer but the treatment didn't stop the pain. He prescribed Neurontin which worked wonderfully for the first month so he diagnosed me with neuralgia. He didn't say what kind of neuralgia and then the pain started to come back… I'm still on 1200mg three times a day. Narcotics do work but he wouldn't give me more than 20 Norco because the of medical board… He was worried about his license. He told me to find a pain doctor… Every pain specialist refused me because they didn't deal with "that kind of pain" I set about researching my symptoms and came up with Pudendal Neuralgia myself and also discovered Dr Hibner in the process!!! It took me three months of fighting for past medical records and referrals from my insurance company before I finally got an appointment. The tears I have cried over the last five years are unbelievable… So I have a double whammy…. I have to see the other guy every three months because Apparently the autoimmune can develop scar tissue and close up my vagina!!!!!! 😳😳😳
So last week I saw Dr Hibner… He did an MRI which indicated no nerve entrapment which is good but he did say that because of the pelvic surgeries I'd had in the past the nerve was irritated and was causing the neuralgia. I'm all set for a CT guided spinal nerve block in a few weeks and then the following week he's going to inject botox into my pelvic floor and also do nerve blocks either side of the pudendal nerve from the inside of my pelvis. He's also given me strict instructions to see a specialty physical therapist.
He was thorough and also so kind and he really is passionate about his work. Patients come from all over the US to see him and also from other countries too. You can web search him and find interviews and info on his views
Good luck with your treatment and research into new doctors. I'm sorry you're having this pain too.. It's miserable and debilitating. Have you tried lidocaine ointment 10%? It's a prescription but it helps immensely with the genital pain… Coccyx pain and sit bone pain obviously not but some relief is better than none.

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