Pudendal Nerve Entrapment/Neuropathy/Damage

I may also have pudendal nerve entrapment and SI nerve entrapment. This is extremely painful. Any advice would be appreciated. With gratitude.

I will add to my previous comment. No, I have not seen a "spine doctor" but hoping for a referral, which is difficult to get at times. Presently going to a pain clinic. Anyone have any input? I am in Ontario Canada.

I'm new to this group but not pudendal neuralgia. Pain started in 2009. Was told after an xray it was pseudo gout in my proximal hamstring and was untreatable short of major surgery involving cutting the tendon, scraping the ischial tuberosity and reconnecting the hamstring tendon. Needless to say I didn't go that route. In 2015 they suggested PRP with needling of the tendon. All this did was agitate the situation. In 2017 they suggested TENEX which provided some relief but told me there was an issue with the adductor tendon and they couldn't do TENEX on the adductor tendon. In 2020 a new procedure called Tenjet was proposed and done on both the hamstring and adductor tendons. When that didn't help another ortho suggested trying shockwave therapy. That DEFINITELY was not helpful. In between I've had pelvic floor physical therapy, regular physical therapy, lumbar ablations, right SI ablation, and numerous diagnostic nerve injections. I don't know when this was actually finally diagnosed as pudendal neuralgia, maybe 2016. In 2021 they tacked on chronic pain, myofascial pain, sacroiliitis and recently fibromyalgia. They now are proposing ketamine infusions and if that doesn't help, spinal cord stimulation. There are many options to try. Be persistent and don't give up nor accept no for an answer.

Welcome @mikena, It sounds like you have been through a lot on your journey with pudendal neuralgia. Thank you for sharing your experience but most of all for reinforcing that each of us need to be persistent and aware of options when it comes to health conditions.

Do you mind sharing what brought you to Connect?

I have osteoarthritis and fibromyalgia. I had a left knee replacement last
year, which helped a great deal. Now my shoulder joints and cervical spine
are affected. Some days reaching 6 inches is too painful or my arms just
will not stretch. I am currently using PT which helps plus Tylenol and
duloxetine for fibromyalgia. The pain has become worse so I cannot
substitute teach much. I will have to apply for SSDI.

I'm always looking for new help and information. Also, I'm having problems with BPH and entered a research study at a local research hospital and may soon reach out to Mayo for help as I believe they are probably involved with the same study.

Hi, your not alone out there.
I have been dealing with this since Novemeber 2023. Have been to dozens of doctors... many not having a clue about it or not wanting to bother to help . Believe me, I have had doctors ( neurosurgeons) who have said, "I have no idea what that is". Theses are nerves, that every neurosurgeon should know where they are! I have had nerve blocks internally ( vaginally and extremly painful) and externally that help with the pain for a few weeks.

Found a new MRI machine that does film for the nerves only - MR Neurography- very hard to find other than at the large teaching hospitals- but your doctors don't tell you about this! It would help to know where exactly the nerve is ( there are soo many) so that targeting for a surgery would be easy. I have been doing research on doctors that do "decompression surgery of the nerve" which I hear is very dangerours.- all over the United States. Extremly expensive if they don't take your insurance ( upward of $100,000)

I'm at wits end.... ALSO considering NALU - periperal nerve stimulation -- don't know if I really like this option, but considering it, to just get rid of the pain until I can find a CURE, not a Bandaid. If anyone else has something, somwhere please let me know!! Thanks

Hi. I have fibro and have been treated for it by MD's since I was first diagnosed in 2000. There are several more medicines that help with Fibro. I have been on Lyrica for about 15 years. I would not be able to have a life without it. I have never had any bad reactions from it. It may be beneficial to add that or gabapentin, to your medicine. Also I take Tylenol along with one Aleve. Together they are more powerful for most types of pain. Sending good thought to you. Taking Glucosamine and turmeric are excellent for osteoarthritis or joint pain.

Hello, Topamax. Dosage?
I have suffered over 2 yrs. 66 yr old male. 4 nerve blocks. Have been trying a relatively new (for men, I am told) Pelvic floor Therapy. Seem to be getting some relief. 3 months so far, they nerve entrapment is in back. But if could get relief from Topamax I would try. Take gabapentin now, no help. Thanks , Johnhenry

I don't remember the dosage. I took it off-label for a daily persistent headache and it just happened to work on my pudenal nerve. Makes sense though since it is anti-seizure medicine and it is a spasm down there. My pelvic therapist said she had heard of it before.