Pudendal Nerve Entrapment/Neuropathy/Damage

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.

Good information. Regarding the nerve block process to find the troubling muscle my wife has had three attempts at a nerve block. One in the caudal area and two in the buttocks which was driven by imaging techniques. To the surprise of the doctors all three has zero affect on her pain. We are now at another doctor who wants to inject a steroid into the lower spine where the pudendal nerve roots are. He indicated that there may be inflammation at this point that is causing the nerve pain. My response was "Well then lets find the cause of inflammation rather than trying to treat the symptom." The doctor said that due to poor posture (favoring one side when she had shingles pain) that the spine may be compressing that area and causing the inflammation. We are looking into an inversion table to help straighten out this area IF it indeed is the cause.

Interesting you should mention the hip area. My wife's pain is more towards the ends of the pudendal nerve. However, she responds well to massaging up near the hip. While it does not relieve the pain it makes it feel somewhat better. I will look more into this area as well as the sacrotuberous muscle area as possible entrapment areas. I am a believer in stretching as I was ready for both hip and knee replacements when the surgeon said to try PT first. It was amazing the relief I got and almost immediately. Now I am pain free in both areas. Also I can have serious lower back pain episodes if I don't keep these areas stretched properly. The pain is so intense I said I would rather pass two kidney stones then go through a lower back pain episode. Stretching was the key to resolving this problem.

It was Topamax. I only took it for maybe 2 weeks. My pelvic PT told me that she had read that this helps. Good luck!

My wife has had pudendal nerve pain for 8 years. Initially the pain was due to a bout of shingles. However, during the recovery period I believe that something new kicked in which I believe is PNE (Pudendal Nerve Entrapment) as the symptoms are identical and to me it makes sense. The pain areas in the pelvic region are exactly where the pudendal nerve goes. PNE normally is resolved by relief of any muscle or scar tissue that may be entrapping the pudendal nerve. There are many facilities around the country that treat this condition and the treatment is massaging, dialators, etc. of the muscles that could be entrapping the pudendal nerve. My wife gets some relief from this kind of treatment but it is temporary and it only helps some. We have been to many facilities including the Mayo Clinic but the doctors don't seem to recognize PNE as mostly they want to use pain meds as a course of action. We want a solution. We have tried nerve blocks in the caudal area as well as lower in the buttocks with zero pain relief.

There is a muscle group that entraps the pudendal nerve and that is the sacrotubernous ligament which can easily entrap the nerve. There are specific massaging techniques that can relieve this pressure.

Given that my wife's pain varies doctors have agreed that the nerve is not damaged. This is good news as apparently there is no treatment for a damaged nerve.

We have looked into neurostimulators. My main concern is affect on other nerves in the probe area as well as other more serious issues. I contacted two companies about their devices and neither company has any data on helping pudendal nerve issues so we would be on our own as far as what to expect. However, I had heard about paralysis as a possible side affect. Again I contacted both companies regarding the frequency of this issue but neither would respond to my requests. That was unfortunate. Then we find that a neighbor down the street from us was paralyzed due to this procedure. Now I don't want to scare people out of going through this procedure as this is a case of one out of ...............I don't know. A 100. A 1000, A 10,000. I just don't know. A doctor at Mayo told us that 20% of these need to be readjusted (surgery) within 5 years and over time they become less and less effective. Given all of the above we chose not to go through with the procedure.

Another neuro doctor is suggesting that the pain is due to inflammation of root of the pudendal nerve which resides at the spinal cord where it connects to the spinal column. Here they want to inject steroids to reduce the inflammation. Results may be nothing, good for two weeks, two months,????? They can't predict. IF this is the source then my choice would be to determine why it is inflamed at this area and resolve this issue rather than throwing meds at it.

We are also looking into inversion tables as a source of relief. The theory being that maybe her spine is shrinking due to aging and therefore entrapping the pudendal nerve. Also since she favors sitting on one side to relieve the sensitive side maybe the spine got reformed and therefore entrapping the nerve. So we will give it a try to see what happens. We have also tried acupuncture, all the suggested vitamins for neuropathy, etc., but with no success. I read a lot of articles where sugar can cause nerve pain issues to heighten so we will be doing a sugar free diet for a couple of weeks to see what happens. MRIs show nothing but a dual frequency laser treatment has helped some but for only a day or two. My wife is on gabapentin and CBD oil. CBD oil takes some of the edge off of the pain so she uses it frequently.

Scar tissue may be another cause of entrapment. Women who have an an episiotomy during child birth can develop scar tissue in this area which is close to where the pudendal nerve travels. Haven't found any doctors who buy into this theory but a lot of my wife's pain emanates from this area so I am suspect. A PT friend of mine says that when a rotator cuff is torn in the shoulder scar tissue can form around a nerve and cause pain. In these cases surgery has helped release the entrapment. However, the nerves in this area are not complex nerves like the pudendal nerve which I guess is one reason most doctors don't want to do anything invasive since they may end up causing damage to the nerve which would result in even more pain.

Sorry for the long post. However, I wanted to present everything that we have done. I would like to hear from the rest of you about what you tried and what were the results.

@mikaylar Are you saying that taking Topamax for 2 weeks gave you PERMANENT relief from pudental entrapment? Or did you need to stop taking it for other reasons and the pain returned?

@lioness I also have pudendal entrapment pain emanating from the area of my episiotomy scar on the left side only. I am working with my Nevro tech to find the right settings for my spinal cord stimulator but it does definitely help with much of my pain. However, so far it can’t take away pain caused by sitting for long periods.

@bunnybear Just saw your post Mine was caused bad a hard fall.I finally found what helps me is a good back brace for my lower back also just heat Dr tried to talk me into a stimulator but I didn't do it I'm a exercise person and just do twice a week yes I'm not without pain but it's livable

I was taking Topamax off-label for a daily persistent headache and within 2 weeks my pudental pain was gone. I mentioned this to my pelvic PT and she said she had heard about that. Well, hello, why didn't you tell me!!! This is anti-seizure medicine. Makes sense if the area is in a spasm, right?