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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@lioness, Good morning. Thanks for the post. Just wanted to let you know that MFR took care of the knots in the thigh muscle. Now my therapist checks those areas every week to prevent restrictions making their way back to hunt me down. Much gratitude to Amy and Sherry. They’ve got my back. Have a lovely day. Chris
Thank you for sharing all the information.
@bkruppa Here is an article about Nattokinase. Bear in mind, it is mostly speaking of the food natto. Supplements are more concentrated. However, there is a reference trail in this paper (these two papers I posted aren't necessarily in the most top notch journals). However, Big Pharma is definitely not going to fund research on things like Nattokinase and serrapeptidase (serrapeptase) since they don't make money on these. These are supplements and they may have less side effects that some of the anti-clotting meds prescribed by MD's. Notice that this can possibly prevent clots from forming, possibly reduce atherosclerosis, lower blood pressure, etc. When taking supplements, I would recommend monitoring blood pressure. I do believe the only contraindication is if you are on anticoagulant medicines already. The recommended dosage may be near 2000 U once daily for Nattokinase. I believe this can be taken along with serrapeptidase.
Nattokinase as antithrombolytic 10 (Nattokinase-as-antithrombolytic-10.1177_1177271918785130.pdf)
I have numbness, needle sticks and the worst nerve damage on my left side! The pain is horrible, and no one seems to understand!! I can't sleep from the pain! I pray to get better !
Hellon resawaller, I have terrible pain on my left side too from my feet, legs, arms, neck, hands and can barely walk. My diagnosis is CIDP and small cell skin neuropathy. I start infusions on the 22nd. What helps reduce my pain are cymbalta, an opiate, advil, a little exercise and ambien to help sleep. Maybe see a pain doctor to help address your pain. I feel badly for you and wish you less pain. You probably are but be aggressive in seeking medical help to stop the pain. Do you know why your having so much pain?
I developed pudendal and obturator nerve entrapment on one side of the vagina immediately after my hysterectomy. It too a few years and doctors to finally find an ob/gyn specialist who operates to relieve the entrapment: Dr.Mark Conway, Merrimac, New Hampshire. He is one of only several doctors in the USA who specializes in this area. I had two surgeries over two years and have gone from an "8" level pain to a "3" in just one tiny area. I apply lidocaine cream every night to this small area to make it less sensitive. This doctor was my gift!! I still see him every year.
Thank you so much for replying to me ! I feel so alone with my pain ,I'm on lyrics, and oxycotin and it is not helping much! My doctor wants to do surgery for Chianti, but I dnt trust him ! He says it want help my nerve damage, only my headaches. I need my nerve damage fixed! I'm in hell and having a hard time taking care of my husband and grandson, if anyone has some advice please help
Have you seen a pelvic floor specialist? I had pudendal nerve pain after a surgery on my pelvis and for months sitting, laying, and standing were extremely painful. I saw a massage/ active release technique specialist every week who worked on all of the tight muscles outside my body. I am now seeing a pelvic floor specialist who is working on the internal pressure/trigger points that need to be released . I suggest both of these as they are helping me. God Bless!
Very good post with details and I hope I can give you a little bit of help with my PNE experience. I have suffered from this debilitating pain since I was 40 years old. I am about to turn 58. I was never able to get an answer about the cause of my PNE. Just woke up one day and there it was. I thought I was going to die from the pain. I tried everything I could come up with and everything you mentioned in your post. First, let me say, do not get a Stimulator Implant. I got a Medtronic one years ago. For the pudendal nerve the trial for the implant is very difficult. There are too many wires and equipment outside your body during the trial that keep you from moving normally. In order to know if it works, you must be able to mimic your everyday life and with that trial it is impossible. I was so desperate, I bit the bullet and had one put in. First thing is, it is a very difficult surgery because you have to be awake and alert to be able to tell the surgeon where you feel the best place for the lead wires to be placed (there are four). The issue I had is you have the control of the level of stimulation you receive and because the pudendal Nerve is located where your body bends a lot it was totally impossible to find a setting that worked because as soon as you moved positions the need for more or less power was immediate. If the need was for less then the pain of too much electrical current was brutal until you could grab the controller and turn it down. I had that a long time ago and I am told the newer technology has made them better. I still think because of the location of the nerve it isn’t a good answer. I had a zillion injections. I had bilateral pudendal nerve entrapment surgery by a specialist in Minnesota (who I am sure would be retired by now). I live in Kentucky and getting that done was a huge ordeal. I made five trips there and the trip for the surgery I had to stay for a week. After, I had to stay on my couch for six weeks (which I didn’t because I am a commercial office designer and general contractor of office space and I had work to do). After going through all of that it was a total failure. I also took narcotics for years and gabapentin (which I still take). I got up to 70 mg of OxyContin a day and it wasn’t doing much. Narcotics, as you probably already know, don’t do that much for neuropathy. I ended up having the Stimulator removed after it stayed in my body turned off for several years. Then I got a Medtronic implanted medication infusion pump system about ten years ago. In order to qualify for that I had to break my dependency on oral narcotics (which was one of the hardest things I have ever done) and stay off of them for six weeks. The reservoir is implanted in your stomach on the left and tubing is tunneled around and attached to your spinal cord. My pump contains morphine and Marcaine. The difference is it delivers a very small amount that basically sits in your spine and blocks the pain signals coming from the pudendal nerve to the brain. It is totally different than taking oral narcotics that get into your entire system and your brain. There is no complicated controls the user has to adjust. It is completely contained in your body and any medication level changes are done by your doctors office. I have to get mine filled about every 70 days (refills are quick and just a needle stick into a port in the actual pump). The pump itself took some getting used to. Just having it in my body and I am fairly thin so it was a big adjustment. The pump (but not the tubing) has to be replaced about every six years. I am on my second one and due for a third in sixteen months. I will tell you it isn’t a complete fix but it took me from wanting to jump off a building to being able to have a fairly normal life. I still have times that the pain is worse than other times but I have just learned after all these years a lot of the ups and downs have to do with stress, too much sitting, squats (yes I am able to go to the gym and work and do lots of things). You just have to find your own irritants and make lifestyle adjustments. I still supplement with gabapentin. Sometimes I have bad days and sometimes I hardly notice it’s there. You also have to learn to push the pain to the back of your mind. Dwelling on it causes stress which causes it to be worse. My life will never be pain free but compared to what it used to be the pump system saved my life. If you want to talk to someone about it, find a good pain clinic. If you are near a good university with a good pain management department I would recommend that. I go to the University of Kentucky Interventional Pain Clinic for both the pump management and the surgeries. If you have any questions I am happy to answer.
Have you discussed an implanted medication infusion pump (mine is a Medtronic). It’s best to go to a good Interventional Pain Management Clinic at a university or good hospital. I have suffered like you mostly in silence for 19 years and tried everything including invasive surgery. The pump is the only thing that kept me from jumping off a building. It doesn’t completely relieve the pain but it makes it manageable most of the time. You learn your own irritants over time. Stress is a big one. The pump requires no outside controls and lasts about six years. I have to get a refill about every 70 days. It contains morphine and Marcaine but does not get into your system like oral narcotics. It drips a minimal amount in your spinal fluid that acts as a block to keep the pain signals from going to the brain as much. I am on my second one (had pump for about ten years) and also supplement with gabapentin. Not a perfect fix but I have tried everything I have read on this forum and then some and it is the only thing that gave me anything close to a normal life back. Your comment about suffering in silence broke my heart and I had to reply because that is me. Suffering in silence for 19 years.