Pudendal Nerve Entrapment/Neuropathy/Damage

@kwbethune menu remember her surgeon’s name? Did you travel out of state? It is so hard to find someone knowledgeable on any nerve related conditions besides “neuropathy” and even then, options aren’t great. Thanks for the info!

I also have pne. Im waiting for a MRN. A MRI for nerves in my lower abdomen. Lot's of pain. Ice, elevate legs, pain meds OTC or perscibed meds don't help much. Traveled to NJ to see Dr. Feingold from CT. and learned that it's not rectal where the pain is. Lower abdomen pain is severe. I've also had 11 coils for venous congestion syndrome. Also had a fissure that I healed. This started 2 years ago with a fistula repair. CT doctors don't seem to be educated regarding our issue.
Looking for anything that you have learned and I will also share.
Pub Med is a little helpfilul.

@paper10
I read in a medical journal that because PN is so rare that when neurology students are taught very little about it.
Mayo Clinic has a whole chapter regarding PN. Same with Cleveland Clinic.
I’m having the same problem with the doctors down South. They don’t know what to do with me.

@paper10
I read in a medical journal that because PN is so rare that when neurology students are taught very little about it.
Mayo Clinic has a whole chapter regarding PN. Same with Cleveland Clinic.
I’m having the same problem with the doctors down South. They don’t know what to do with me.

I will tell you what to do. I had this monster for 14 years before I was cured in 2 weeks. I was given the anti-seizure drug, Topamax off-label for a daily persistent migraine. It relieved the pain in my butt in 2 weeks, but did nothing for my headache. My pelvic therapist told me a year later that she had heard of this. It is worth a try. Topamax had nasty side effects but you won't need to take it long. Worth a shot, right?

Ugh, i hear ya. Not very helpful is it. My Dr. basically said he doesn't know what else to do test wise. I've had all kinds & tho it's great nothing has been found if all those results lessened painful symptoms I'd be thrilled. Not so obviously. Hope you find some answers. Take care.
@sapphiregirl

I will tell you what to do. I had this monster for 14 years before I was cured in 2 weeks. I was given the anti-seizure drug, Topamax off-label for a daily persistent migraine. It relieved the pain in my butt in 2 weeks, but did nothing for my headache. My pelvic therapist told me a year later that she had heard of this. It is worth a try. Topamax had nasty side effects but you won't need to take it long. Worth a shot, right?

Interesting. Can you please elaborate on the bride effects? Are they reactions most people experience with that particular med? Any luck with the migraines? Those are so debilitating, feel for ya. Having head &,butt pain would be horrible. Thanks for the tip, wishing you relief from suffering pain.

@mikaylar

Normal anti-seizure drug side effects. I am having a spinal block and blood patch in my spine in August to see if this helps the headache I have had for almost 7 yrs constantly.