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.
Interested in more discussions like this? Go to the Chronic Pain Support Group.
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.