Pudendal Nerve Entrapment/Neuropathy/Damage

I don’t know where you are from , I have had the same problem. I am going to a new pain doctor, he has no idea either,

I would also like to know , I have tried Arkansas, and Texas so far

I have a Neurostimulator, to me it distracts your mind from the pain.

I will not get rid of the pain but will make it seem less. But I still couldn’t get back to the life I had before my accident.

My experience has been if a vain doctor does not know the answer then he or she says that it is all in your head. Sorry but I do not have the name of someone to help you.

I came upon Mayo Clinic Connect and this group while researching neuropathic pain in the pudendal area. I am so glad I found you! I was beginning to think I was the only person on the planet who has this problem! I am a 65 year old male and also have mild small cell neuropathy in my feet. Three doctors have looked at me oddly when I've described my pudendal symptoms. My neurologist, who is rather highly respected in this state, listened patiently, prescribed Tegretol and nortriptyline, and mentioned a nerve block. The PA who I see monthly for chronic back pain medication management, ordered an MRI looking for spinal involvement and plans to order more imaging if necessary to rule out a tumor, (which she thinks is unlikely). The problem began with an intermittent, slight tingling/vibration sensation which after 8 months has become much more pronounced. There is also a very dull, unpleasant ache which resembles the sensation of feeling returning to a hand or foot after it has "fallen asleep." Both the tingling/vibration and the aching come and go and can very slowly move from place to place in the pudendal region. Somtimes the pain is bad enough to keep me awake all night and it seems to be slowly getting worse. This is scary and is driving me crazy! Does anyone have any insight or suggestions? Thank you so much for listening!!

Hello Bob @barikury, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. While we wait for other members to share their experiences and what has helped them, you might find the following discussions helpful:

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@bkruppa, @ahayes, @richman54660 and others may have some suggestions to share with you. Have you looked into any alternative treatments or therapy?

Hi John, thanks for the response. Having a lot of pain again tonight and can't sleep. I can't find a position where the aching is less intense. Tonight the pain is centered in the perineum. It can appear in the genitals or as far back as the anus. It can very slowly move from one spot to another as the day or night goes on and some days are worse than others. Today has been a bad day. Eight months ago this was just a faint "vibration-like" sensation in the groin but now it is miserable. It's scary to think of what this will be like in another eight months, or two years!!

I saw a new provider today, a nurse practitioner who will manage the meds I take for chronic depression. I had to spend two hours round trip in the car to go see him and it was not a pleasant drive thanks to the pain. I take Viibryd, an antidepressant which has actually been quite effective against my depression, and lamotrigine which acts as a booster. I described my pain problem to my new provider and he of course had never heard of chronic neuropathic pain in the genitals but he was at least willing to listen.

To answer your question John, at this point I am seeing a neurologist and a pain specialist PA. If they can't help me then perhaps I'll try Wake Forest or Duke University or Emory in Atlanta (we live in western NC). Now, all I want is to get some sleep. Thank you so much for listening!! Bob

Yes, I recall the aloneness but this is what worked for me after 14 years of sitting on a donut......anti-seizure medicine that I was taking off-label for another medical condition. Please mention this to your doctor. I didn't take it long and it worked!

Hi there, my sympathies go with you and I know how nerve pain can be relentless.
I know a little something about what you are going through when talking about genital nerve pain. I have had MS for many years, and know many symptoms that have been brought on by it, including internal vibration.
I have self helped myself with pain relief products over the years and I can let you know that a hemp oil which has anti inflammatory properties has helped me so much with my nerve pain anywhere on my body. Within fifteen minutes of applying it my pain has subsided and I can finally go to sleep.
I would be glad to give you the name and where you can buy it online in Canada if you are interested.
My best wishes for your health