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Dec 28, 2019 · Anyone out there diagnosed with Pudendal Neuralgia? in Brain & Nervous System

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.

Dec 27, 2019 · Anyone out there diagnosed with Pudendal Neuralgia? in Brain & Nervous System

Have you tried lidocaine ointment 10%? It really helps me…. I know the nerve endings aren't prominent but I don't feel a thing when I apply it… It last for quite a few hours for me… I don't go anywhere without it! Could be worth I try? My doctor sends my RX to have it compounded so insurance doesn't cover it…. Usually about $30

Dec 26, 2019 · Anyone out there diagnosed with Pudendal Neuralgia? in Brain & Nervous System

Well guys… I get to have a CT guided nerve block on Jan 21… Then I go to counseling with Dr Hibner on the 24th before the procedure on the 31st… Botox into the pelvic floor… A nerve block internally on either side of the pudendal nerve and also a diagnostic ultrasound to make sure all the veins are working well… I'm praying so hard that this will work… The doc says he's had a lot of success so I'll keep you all posted ❣️

Dec 18, 2019 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

FYI…. Did y'all know that pudendal is Latin for shame! Just thought I'd share that snippet… Dang!!!

Dec 18, 2019 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

I saw my new doc for the first time today… He's a pelvic pain specialist. Dr Michael Hibner in phx AZ. He's one of only 10 specialists in this field in the US and patients come here to see him from other countries as well as out of state. If you Google him you'll find lots of info…. He also has a couple interviews on you tube. He was very knowledgeable, considerate and caring… He gave me some hope. I saw his physical therapist first who was amazing in assessing my problem! Stay strong and I hope you can get some relief

Dec 16, 2019 · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

I tried it and I didn't get any relief at all!! Nor did I get high… I tried smoking it and the gummies… So I guess that's not an option for me!