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Pudendal Nerve Entrapment/Neuropathy/Damage
Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I'm very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want - for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.
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Thank you for sharing; your experiences are very helpful information. I, too, have only found relief from sitting on ice packs.
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1 ReactionI was injected w/ a sedative to numb the pudental nerve, but to no avail.
Yes, I too have been diagnosed with pudendal neuralgia along with small fiber and peripheral sensory, non-diabetic neuropathy. So far I have tried 6 months of IVIG injections to no avail, and over a year of pelvic physical therapy to no avail. Horizant (gabapentin enocarbil)helps a little. I have an upcoming appointment with the Mayo Clinic pain department to explore other treatment options. For the pudendal neuralgia which makes sitting painful, I get temporary relief from Lidocaine 4%. I am 78 y/o female. and have been dealing with this painful condition since pre COVID. Will let you know if I find out anything more helpful.
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2 ReactionsYou were able to get an appointment with the mayo nerve department? I have been trying since Oct of 2022. I am desperate. I also have pudendal neuralgia.
Ross
I have an appt for pudendal nerve block from a Mayo pain doc.
Thanks so much for taking the time to reply. When is your appointment? I hope you get the fix you need. Would you be okay with providing the doctors name. I am dealing with Non Hodgkin's Lymphoma, so I am desperate to get some answers to my pudendal nerve pain. I tried calling the neurology dept 2x since October and both times they told me no appointments available. All the best to you and if you are comfortable with sharing your experience, please do. Best of
luck to you. Ross
I understand your frustration. Pudendal nerve pain is a life disrupter for sure! I was referred to Mayo Clinic’s “Pain Department” and was told that they did the pudendal nerve blocks. The doctor I saw said that the blocks have a likelihood of about %50 effectiveness, but I think it is worth a try. My appointment is at the end of June. I will post how I do. The only doctor I’ve heard of outside of Mayo who does them is Dr Hibner in Scottsdale, but he is a cash only provider - accepts no insurance.
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1 Reaction14 years and nothing worked for me until I took an anti-seizure medicine. Two weeks later - gone!
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3 ReactionsGlad it has helped you. Which medication?
I’ve been on Gabapentin for 2 years.
Topamax