Pudendal Nerve Entrapment/Neuropathy/Damage

@donfeld
Since you have arachnoiditis I strongly urge you to do some reading at http://www.arachnoiditishope.com and http://www.intractablepain.com There is a self help protocol that WILL help with your pain and overall health. You will also find a bunch of into. for you to print out and take to your doctor. Best wishes to you!

@jesfactsmon

So glad to hear that your wife is already taking PEA! Not sure what she is taking for inflammation but she may want to start Tumeric and maybe take some info. in to her doctor. There is some very interesting reading about pain and inflammation on both websites I listed. Please urge your wife to check them out. Best wishes to both of you!!

Here is the PEA (Palmitoylethanolamide) that I'm taking. I take one in the morning and one at night. https://www.amazon.com/gp/product/B084T9BFHT/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1

@qball2019 Thanks. I clarified with my wife what she meant by feeling more energy and she said she is feeling less pain and that is what is giving her the energy. She is taking 4 400 mg caps/day (or was; I'm not sure, she is doing a lot of experimenting with it). Her brand is Nootropics Depot. What Turmeric are you taking? Best, Hank

Yes, am learning this from others. Find the best solution & stick with it. I MAY b getting the 5 day TRIAL for the spinal cord nerve stimulator. It will help my very complicated spine pain & my Pudendal nerve Neuralgia type symptoms!!
My Pudendendal nerve BLOCK under CT scan did NOT helped me, which proved that I do not have exactly this...but ALL similar symptoms in the pelvic floor !!
Mary Ellen

FYI intractablepain.com no longer exists and the domain is for sale

I am a wee bit late with this reply. Has anyone been able to help you? I have been doing better diet wise and that has almost eliminated my problem.

I have an extensive episiotomy scar (50 years ago) and now suffer w/ nerve entrapment. Considering CBD oil and wonder if she is taking it internally or using it topically? Working w/my chiropractor/naturopath but progress is very slow and pain constant. I have increased my calcium supplements to take the edge off the pain, a little help but not enough.

I see your post is 2 years old, and wonder if you have found any relief? I am interested in knowing whether anyone has had any success w/CBD oil, either internally or topically. Or any other non-steroidal topical treatment?

Hi there @gardenvariety25
The person you are addressing, @mandiPNE , who started this discussion never posted again. Its likely they are no longer following Mayo Connect (although I have been surprised in a situation like this before so you never know). But one thing about this forum is that there are sure to be some people who are in a similar boat as you and who might have experimented with cbd oil or have other ideas that might help you.

If you use the search function above (click on the magnifying glass symbol) and type in cbd you will find a lot of discussions in which cbd oil is discussed, not for your specific problem in most cases, but for a variety of different conditions. At least you can get a sense of how people use it and what its track record is like. And you can address any of the individuals in the discussions and ask them your questions. You'll likely get some feedback, some hopefully useful to you.

Also, there are other discussions about pudendal issues, again you can find them by putting "pudendal" into the search window. I do hope you find answers you are seeking. I also hope (and believe) that you will connect with others who are familiar with, and sympathetic to, your pudendal related problem. The wonderful thing about Mayo Connect is the people on here. Very welcoming and understanding as well as warm and compassionate. It's a support group as much as it is a place to exchange info, although i is great as that as well.

All my best to you, Hank

@1mepnurse and others. I had some kind of nerve compression as well as lower lumbar DDD. A lot of the symptoms seem like a neuropathy - but they could be myofascial pain, too. In the pelvis, you have sheets of muscle that can become tense. Depending on your age and physical condition, you can try any or all of what I suggest, below. My sitting pain is much better and there is not much leg tension and shooting pain including sciatica any more for me. I'd posted this previously for someone else who had suspected pelvic floor dysfunction (sorry, long post):

I might recommend something unconventional. I have lower lumbar DDD and that makes for pain sensitivity to those area you're talking about. I think you should really try the enzymes nattokinase, serrapeptidase and lumbrokinase. You'll want to add them slowly and also keep doing exercises that keep you moving and strengthen the pelvic floor (I personally love TRX suspension work and Pilates reformer). You can heal and the tissue can remodel. You can also boost your consumption of flavinoids in general + extra vitamin C spaced out to assist with healing. I believe the enzymes will be the miracle workers including getting rid of bumps / cysts / etc.. I'm going to post a review I wrote for a book by Dr. Greg Fors re: "why we hurt and how we heal", 2nd edition. In that review, I've summarized everything that I do along with a review of the book. Beware: the enzymes might be counterindicated if you are on blood thinning medications (warfarin, etc.). Also, about 10% of people are irritated by these (gastrointestinal irritation). Otherwise, you should be OK. There are affordable versions of nattokinase and Serrapeptidase out there. Here goes with the review and protocol.

Dr. Fors book. Why we hurt. How we heal. Sorry, this is a long post:
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, which included some pelvic floor tension, I believe. 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!

Short version: supplements can help relieve inflammation and nerve irritation and stretching and exercise - the right ones - can also really help. Good luck, hope some of this helps. Rich