Pudendal Nerve Entrapment/Neuropathy/Damage

Good feedback. Thanks.

My wife's situation has one added symptom that I don't see in any of these discussions and that is swelling in the area of pain. The question would be does a compressed/irritated/entrapped nerve cause swelling? The other condition that my wife experiences is the level of pain varies. Most of the time it is a 7 or 8 while other times it is a 2, 3, or 4. We try to look back to see what she did different but never can put a good case together as to the cause. Any ideas? Different muscle tensions?

Saying that everything is connected together is good information. I notice that massaging of muscles in the hip area and upper buttocks area gives a lot of help to her and these areas are far removed from her areas of pain. I understand that there is a sacrotuberous muscle in the buttocks that is directly involved with the pudendal nerve and if it is tensed up it will compress the nerve and cause the type of pain that is being discussed here. Usually it takes an experienced therapist to massage this properly to relieve the tension.

I have pudendal nerve spasms which are treated at my MI Pain Consultants I n Grand Rapids MI. My doctor gives me pudendal nerve blocks which give me some relief. I have terribly painful spasms in the front of both legs from the groin to the knees. Feels like my legs are being crushed. The spasms last for hours. it's either rare or no one talks about it.
Maybe you can talk to your doctor about the treatment I receive. God bless.

@bkruppa I'm sorry to hear about there being so much pain. Yes, nerves can promote swelling. They can also affect vascular supply to areas, too. However, swelling can also be from poor venous or poor lymphatic return (and even that can be affected by nerves or for other reasons).

It is quite possible that your wife's pain is actually generated by the areas above the pain as "referred pain" (and tension) can travel far. One thing to consider is self massage with a Rollga roller (there is both a Pro and a soft Rollga model). These are curved foam rollers (rather than flat ones) and are a little easier to work with than rolling on massage balls in case you think some of the pain is from myofascial (muscular) tension compressing the nerve. These work well all over the body including legs, glutes, upper back, etc. They helped me get rid of tight IT bands and other areas of tightness I had in my legs and glutes. They are sold on Amazon and there are instructional videos on the web (youtube; you just don't roll on the lower back as that can trigger spasms). That way you can do self massage regularly rather than relying on massage therapists. You can vary how much pressure there is if you use these - so massage can be gentle or aggressive and you can also dwell on an area of tension to get rid of "trigger points". One thing too - the therapist I'm working with for the injury massage I get (described in my prior posts) mentioned his opinion after 28 years - if pain changes with time it probably is not structural (i.e. not bones and ligaments). For instance, my lower back pain comes and goes - but since I started doing TRX suspension core workouts and certain stretches I haven't had a back ache since Christmas. Which leads me to think my back pain is muscular. I'm still trying to get rid of some sitting pain - that causes tension near the tuberosities for me. Ultimately, a pinched nerve somewhere (somewhere in the lumbosacral region) is probably causing that. Also, stretching and whatever movement that is tolerated sometimes helps (walking, recumbent bike, ellipticals, etc., if able). Good luck. If massage helps, I would recommend the Rollga.

@mandee @bkruppa @sdswoboda53 @richman54660 I have no experience with Pundental nerve issues, but wanted to pass along some information that I found that might help about Myofascial Release therapy. There is a lot of information you can find at myofascialrelease.com and treating this condition is on the list. I do MFR with my physical therapist for thoracic outlet syndrome and with recovery from spine surgery and it has helped me a lot. It is a slow process and you have to work through layers, but it restores proper alignment and movement and corrects bad posture that contributes to so many problems. MFR often works where conventional therapies have failed by treating a physical problem.
https://myofascialrelease.com/about/problems-mfr-helps.aspx
https://myofascialrelease.com/downloads/articles/FasciaAsALever.pdf
Lumbo Sacral Decompression video with John Barnes

Hello my name is brad, new member as of today. I had a motorcycle accident in 2003 and damaged my pudendal nerve. I haven’t been able to sit at all since. I either stand or lay down which is taking its role on my body after 15 years of doing it. People don’t realize how important it is to b able to sit. The pain is constant and very severe at times. I have tried a stimulator and morphine pump both to control the pain but unfortunately the cathider and leads of the stimulated stayed constantly inflamed cuz I have to lay on my back so much. I had the stimulator and pump from 2004-2006. I have been taking morphine sulphate for 15 years now, adding lyrica and nortriptiline along the way. I tried many other meds also, but these were the ones that helped the most and were easier on my body than some of the alternatives. I’m tired of living this housebound life and am currently looking into surgery which I have avoided for all these years cuz if things go wrong it could leave me with no bowl control. My pain management dr. Is in the process of looking for the best dr. For me to c to talk to about impingement surgery, I have no idea what is going to happen or were I’m gonna have to go but I’m willing to travel anywhere for one last go at this. I feel deeply for the people having to go through this, be strong and take it day by day . I hope we can help one another by providing information here, I will definitely update my circumstances as they develop . I’d like to hear from some more people that have had the decompression/ impingement surgery please share good or bad

Hi Oregon Brad,

I am deeply sorry for the problems you've been experiencing for so many years. I work with a wonderful pain doctor who has been able to give me some relief with pudendal nerve blocks. It's very painful to sit, and sometimes I get unbearable spasms in the top of both legs, starting in the groin down to my knees. I have a muscle relaxer that helps occasionally, but not always. He said I could try CBD oil to see if it helps. I got some but am afraid to try it. Just makes me feel like I'm taking something illegal. I'm too scared to try the nerve stimulator from the horror stories I've heard. I have a pinched L5 nerve. I also have fibromyalgia among other issues.
Please let me know you are doing. We can keep in touch if you like.
May God touch you with His healing Hands.
Sharon from Michigan

My wife has similar types of pain. Some days it is not too bad while others it seems nothing helps. She uses CBD oil and it helps take the edge off of the pain. It is not as effective as her pain meds but again, with the amount of pain she has anything helps. CBD is NOT illegal. It is sold in many places here in South Carolina and in many states across the country. It is expensive but I suspect as more and more people get into the business pricing will come down.

She has had several nerve blocks tried in various areas of the pudendal nerve but none gave her one ounce of relief. Even the doctors were surprised at the results. We are just starting to use the stimulator so we will see how that turns out. Contrary to what you said I haven't had anyone including doctors say that you can do harm with a TENS stimulator.

We are starting to look into possible sources of pain originating from the spinal chord. Given where the pain is my wife tends to favor sitting on one side which may have caused a deforming of the spinal column and maybe putting pressure on the roots of the pudendal nerve. Right now anything is on the table. However, from all that I've researched it appears that the massaging techniques seem to help or cure this problem the most. Good luck and don't give up as hopefully you will find a cure some day. We are still looking for a cure after 8 years now.

I would like to keep in touch. I have never had a support system. I’ve pretty much turned into a hermit and rarely leave the house except for necessary appointments. I’ve been married for 27 years and have have 5 kids. I feel bad for dragging them all through this, it’s been hard on us all. Take the cbd, anything is worth trying to better your quality of life. I will keep in touch

Wow! You certainly have a large family! That can also be a stressor. And I certainly don't mean that in a bad way...just lots of things you'd love to do with them. And how difficult it can be when you're in pain. I have that with my grandchildren. I want to be able to spend more time with them, but the pain can be prohibitive. You have to find that balance which can be hard. A supportive spouse can make a world of difference. I've been fortunate and blessed with a husband who tries to help out when he can.
I was diagnosed last May by two neurologists with a very rare autoimmune disease called CIDP - Chronic Inflammatory Demyelinating Polyneuropathy. Nobody knows what causes it (same with Fibromyalgia). But my immune system has decided to attack me by eating away at the fatty coverings (myelin) on the nerves in my feet, legs, arm and hands so far. It causes the messages from the brain to become scrambled as it passes down the nerves to those body parts and back to the brain. It's messed up my balance and gait. I started tripping and falling last fall for no apparent reason. After EMG and electrical shocks, blood tests and several doctors, that's the diagnosis. Chronic, no cure, just trying to manage the symptoms with Gamma globulin infusions every 3 weeks. I'm just following the plan...
Will you be seeing any other doctors in the future that might afford you some other ideas for treatment/relief? I wonder if CBD oil might even be an option for you? Might be.worth checking in to. It's not easy living with pain 24/7. I admire your strength and tenacity. God bless you and your family... Sharon

I understand your pain because I suffer from pudendal neuralgia as well. It's from Tarlov cysts that I have in my sacral area. I'm currently waiting for a surgery date for those and am hoping the neuralgia will subside with minimal nerve damage.