Pudendal Nerve Entrapment/Neuropathy/Damage

Posted by mandiPNE @mandee, Oct 5, 2018

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 group.

@melissahebert

new member here, i have been suffering with "for lack of better words" butt pain since 2013. It is mainly on the sit bones. My urologist, who treats me for IC, told me this was caused from the pudendal nerve. He was actually able to do an internal exam and press on the location, which cause the exact pain that if feel. Unfortunately, there is no one in my area who specializes in the pudendal nerve. So basically I don't know if it is entrapment or something else. I do know the pain has intensified and now includes spasms in the anus area.

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Melissa, have you found any relief yet?

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@skiak22

Hi all. I'm a new member and I have read all the posts concerning the pelvic pain. Mine started 9 years ago from no apparent reasons and I've been through all the procedures that everyone has described. I've been standing up for these 9 years trying to find a specialist that knows how to deal with this problem. Sitting is very painful but one thing that no one has mentioned in their posts is laying down is just as painful if not worse. Anyone out there that has both problems? The only way I can get any sleep is by taking prescribed medication. Otherwise, I'm awake all night long and of course the pain is there all night long.

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I think I've had PN for 9 months now and at first laying down took the pain away, but now laying on my back I feel discomfort in my sacral area as well as buttocks. Has anyone wondered if the piriformis muscle might be involved in this? There is a surgeon, Dr. Tollestrup, who removes the piriformis muscle. I wonder if that would relieve pudendal neuralgia symptoms?

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@palmorejs

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.

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Are you able to sit down without pain with this pain pump?

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@cake

I think I've had PN for 9 months now and at first laying down took the pain away, but now laying on my back I feel discomfort in my sacral area as well as buttocks. Has anyone wondered if the piriformis muscle might be involved in this? There is a surgeon, Dr. Tollestrup, who removes the piriformis muscle. I wonder if that would relieve pudendal neuralgia symptoms?

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@shiak22 and others. I've posted many times in this thread and pain in the butt can't sit down thread.

Yes, I had some type of fibrosis and myofascial pain in the glutes and legs including piriformis issues and also tension up and down glutes and legs, sciatica, etc. I managed to get rid of it. I'll tell you how below. Please give it a try. Here is a book review I wrote for a book called "Why we hurt and how we heal" by Dr. Greg Fors (buy the white cover edition on Amazon). Proper stretching, nutrition and supplements helped me and most of my sitting pain is now gone. Bear in mind, if you compress a nerve inside tight muscles, it creates nerve pain. It's all in my review. For exercise, I use a TRX suspension system and all other manner of stretching (but also have a pilates machine (Aeropilates 700) and a Lifepro Rumblex 4D vibration plate and go to the gym for weights on machines and I stretch out daily. Good luck. Add the supplements, get moving in ways you can tolerate.

My review:
Dr. Fors book. Why we hurt and How we heal.

I've had some chronic myofascial pain in glutes and legs and I've found essentially the "cure" on my own. In the meanwhile I'd read other books such as "A headache in the pelvis". That book talks about the problem but doesn't specifically give you the cures (only some "cures"). However, Dr. Fors book is the go to book with practical tips and suggestions. His own story "case study" could practically have been my story with sitting pain and muscular tension. In his book Dr. Fors talks about oxidative stress on tissues, etc. For a person who's interested perhaps you could read it all. However, you can skip some and just go to the practical parts and use that information instead. I personally believe it is poorer circulation and poorer tissue remodeling as we age that causes these issues like myofascial tension and pain (including neuropathic pain). Apparently, I had some fibrosis / extra clotting going on as I got older (i.e. 58-ish). I believe the fibrosis in tissues / veins was causing poorer circulation and stiffness. While speculative, it may be deposits of fibrin (the blood clotting protein) that causes issues when deposited in veins, arteries and tissues and that tends to recruit cells of the immune system (granulocytes) and, hence, you also get "inflammation" (there is your low-grade autoimmunity tie in; these are my opinions; not something Dr. Fors mentioned). I believe this was true in my case. Supplements may alter and reduce this process. Read below for specific suggestions – many of which were mentioned in Dr. Fors book (I added 2 supplements to my regimen as a result of Dr. Fors' suggestions).

I do believe the supplements are the key to promote healing and proper tissue remodeling / regeneration which may go awry as we age and don't heal properly without the correct supplementation. Said differently, as you age you may need to supplement your diet with various plant substances and minerals, etc., for best health. His book is worth the price of that information alone which he details in a chapter on supplements / nutrition – but he doesn't mention adding a little hemp seed oil, etc. (I'm just writing this off the top of my head – there is a lot in this book – maybe he did mention healthy fats). As you take supplements, do check your blood pressure as these can vary it.

For me, proper supplementation (I added on a couple of Dr. Fors' suggestions, along with stretching and exercise) have largely "cured" my tension and pain in the lower back and glutes. I have lower lumbar degenerative disc disease (which is most likely a “perpetuating factor” for myofascial pain) but all my pain comes from muscular tension and pain – which can be controlled without NSAID's and without antidepressants for me (although for a time, I did use some nortryptline for nerve pain). Honestly, if you cure your gut health (Dr. Fors has a whole chapter on that) and take the right supplements, your myofascial tension and pain may go away on its own without needing to do a bunch of trigger point work (possibly; that is what happened to me – but he has a whole chapter on trigger point removal and has invented a tool you can buy separately for trigger point work – instead of using the usual balls and rollers for this). As one other reviewer said, until the root problem is cured the trigger points might simply come back – they did for me, too, at one time.

He has whole chapters about each topic. Especially, adding various supplements such as Flavinoids and flavolignins can really help you heal. Some of the supplements Dr. Fors mentioned such as ginger extract to calm digestion and Milk thistle extract (source of flavinoids) is one of many you can take (silymarin, the active ingredient in milk thistle extract, is a bunch of flavolignins, I believe; I also take diosmin / hesperidin and some quercetin (stay below 500 mg or so daily); these are all flavinoids, I believe / resveratrol; ORAC energy greens (full of plant stuff and – you guessed it flavinoids) and extra vitamin C (staying below 2000 mg daily) and a tblsp of hemp seed oil, and turmeric.

The regimen I use along with stretching and exercise reversed or is cutting down on my sitting pain / neuropathic pain in the legs and glutes (i.e. less "sciatica") and reduced fibrosis in the muscles/veins, etc. I also supplemented with enzymes nattokinase / serrapeptidase and lumbrokinase, too, taken between meals to help with possible fibrin (or other amyloid type deposits) in veins / tissues. These are counter-indicated if you have clotting disorders or about 10% of people simply don't tolerate these in the gut. These have never bothered me and helped tremendously. Unfortunately, Dr. Fors did not mention those supplements that might reduce depositions of proteins in veins / tissues and are thought to be anti-inflammatory. However, these might still be considered “alternative medicine” in the west despite being used in Asia for years. Regardless, you might cure your issues with the right supplements alone, without those enzymes. I found milk thistle extract, recommended by Dr. Fors, was a good addition to the above substances as a source of flavinoids. Yes, cut down on added sugars, too, as Dr. Fors (and everyone else in the universe talks about). I had tried some of the other supplements he mentioned (like devils claw – but found it increased my blood pressure). Many others actually lowered my blood pressure!

Thank you Dr. Fors for an excellent book. It was helpful and practical. I was not compensated for this review.

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@rstollery

Updating the above post, I went to a medical marijuana clinic here and the manager said forget about using CBD or marijuana if you continue to use hydrocodone (which I do 4T daily}. I went to my physical therapist yesterday, and she inserted electronic sensor patches in my buttocks near the rectal area. She feels I don't have PNE but rather a stretching of the Levator Ani flaps which cause them to be too stiff and cause pain. This is also referred to as Chronic Anorectal Pain. She is suggesting a number of relaxation techniques along with goig back to the Tenns unit patches in that area. I will update the group on any (hoped for) progress.

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How are the stretching techniques for the levitor ani flaps working?

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@cake

I don't have the vagina, urethra pain. Just sit bone pain, butt crack pain, and bottom of sacrum and buttocks pain. Not sure what I have.

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Sounds like pudendal neuropathy ! I have it

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@cake

Melissa, where are you located? Mine started 9 months ago at the sit bone and now has progressed to the tailbone. Not sure what to do about it.

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Hi it sounds like what I have which is the monster pudendal neuropathy

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@cake

I think I've had PN for 9 months now and at first laying down took the pain away, but now laying on my back I feel discomfort in my sacral area as well as buttocks. Has anyone wondered if the piriformis muscle might be involved in this? There is a surgeon, Dr. Tollestrup, who removes the piriformis muscle. I wonder if that would relieve pudendal neuralgia symptoms?

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Wow I don’t l ow about removing thst muscle

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@lois6524

how do you find an MFR therapist — I am only finding a few in the Twin Cities area when I search on google

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Hi Lois, Do you have pudendal neuralgia? I think I may. I'm in SE WI. What have you tried so far?

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Hi all, as social interaction is limited with the COVID-19 virus and many members have concerns they'd like to discuss, Mayo Clinic Connect has opened up a brand new group dedicated to COVID-19, https://connect.mayoclinic.org/group/covid-19/. The hope is to help members connect and cope during these unprecedented times.

Please follow the COVID-19 group by clicking on +Follow, look at the discussions there and participate. You are also welcome to start a new discussion on any COVID-19-related topic you'd like to discuss.

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@rstollery

What kind of pain patch are you using that works so good?

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Yes Please tell us about the patch that you’re using

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@cake

Are you able to sit down without pain with this pain pump?

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I can sit down and whether or not I have pain depends on what kind of day pain wise I am having. Mostly I can sit down anytime. I will tell you that sitting is an irritant and sitting for long periods of time really ramps up the pain for me. Also depends on what kind of seat you are sitting on. Long term sitting in a hard chair is terrible. Sitting around my house in comfortable a chair is no problem. I hardly notice the pain. I can always sit. I have just learned which type of seats to avoid if possible.

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