Health Organization for Pudendal Education

Hi everyone,
I’m new here and I have questions because I’m getting extremely worried that the surgery is not working. I had pudendal nerve decompression surgery with Dr Conway in New Hampshire 3 months ago.

I’ve been dealing with pudendal neuralgia although mostly neuropathy (numbness) in my case. I started having numbness in my genitals and erectile dysfunction in September-October 2022. It took a good 18 months to find out about pudendal neuralgia after visiting countless doctors and PTs.

I couldn’t sit because it would cause me to have extreme numbness in my genitals. I also had weak bowel movements (where stools would get stuck halfway). I also had weak urine flow. I had numbness in my legs and inner thighs. Not being able to sit made me work standing up for 2 years which caused me to have back problems. I also developed pelvic floor muscles “falling off” or inflated. I don’t know how to explain it. I guess it is weak pelvic floor muscles.

After surgery I noticed right away (the next day) an improvement in the quality of my stools and urine flow, it was kind of instant. Since 3 months now I have kept that improvement. But I still can’t sit at all without causing numbness in my genitals and I still have that pelvic floor falling off or inflated like carrying a cushion under. When I sit on the toilet seat I get numbness and cold genitals after around 7-10 minutes. I’m kind of bed ridden because of back pain I cannot stand for too long maybe like 20 minutes maximum. So I no longer work for that reason. So I either stand up or lie down in bed. Also I have a bit of pain in the pudendal nerve area but it’s mostly numbness in my genitals the problem. If I sleep with a thick pillow I get worse numbness in my genitals and in my legs. So I like to sleep with thin pillows but it causes me to have back pain. So I’m screwed either way.

Dr Conway told me that it takes 6-24 months before noticing a difference but I saw on Reddit many people getting better after 3 months or so. But I also read on Reddit some people not getting better at all and getting worse. So my question is did anybody get better from the surgery? Anybody else got the surgery from Dr Mark Conway? I’m scared that I will be permanently disabled. I got the transgluteal surgery. I’m thinking of co ta ting Dr Bautrant from France to get advice from him.

Any input, opinion, advice or information would be greatly greatly appreciated. At times I get very depressed thinking I’m screwed for the rest of my life. I’m 40M and have 3 kids. I need to be able to help my wife because she has been doing everything for the past 2 years. Please help. I’m really here for hearing solutions.

Hello Brian,

Welcome to the forum. I'm sorry to hear you are going through this difficult journey.

Based on my own experience and what I have read of other people's experiences on this forum, you are very early in your recovery, so it is way too soon to draw any conclusions about the results of your surgery. I was not able to sit much until about 18 months after surgery. I had a very successful surgery but the recovery was slow. It is common for people to have a worsening of symptoms around the 3–4 month period post-op as the nerve is waking up. So, I can't predict with certainty what the eventual outcome will be for you, but I think there is still room for hope.

Dr. Conway is very experienced so I'm assuming you went through some preoperative diagnostics such as MRI of the lumbosacral area and possibly lumbosacral plexus to rule out any problems in those areas that could be causing your numbness - such as spinal, lumbosacral plexus, or cauda equina issues.

You say you saw PT's before surgery. What was their evaluation as far as anything that might be contributing to your PNE? Was it just weak pelvic floor muscles? Typically there is more going on than just a simple entrapment between two ligaments. For instance, in my case the nerve was entrapped between ligaments but that was partly due to the fact that I had underlying ligament issues with sacroiliac joint dysfunction, pelvic instability, and pelvic misalignment, along with weak pelvic floor muscles. So, those underlying issues had to be dealt with as well as the nerve release.

Where in your back is your pain primarily? I have had severe thoracic back pain which I now deal with by wearing a weight vest 2 hours a day to strengthen the back muscles. The PT exercises did nothing for my back. Wearing the weight vest is hard, but it makes the time during the day when I'm not wearing the vest much better. (I only use 8 pounds.) But this would only be helpful if your back problem is a muscle problem, not a disc/compression problem. I had to work up to the weight vest slowly. I do certain strengthening exercises such as planks to improve the core muscles. All of this takes time and trial and error as to what your body can withstand, and you can't do it really soon after surgery. You have to give yourself some time to heal first and then slowly start working on the weaknesses with some guidance from a PT. Although, when it comes to PT you have to proceed with caution because in my case, they typically assigned way too many exercises that were more than I could handle and some of them caused flare-ups. So I do the ones that help and not the ones that caused flare-ups in symptoms.

If your back pain is primarily lower back/SI joint area, and if you have lax ligaments, you could consider prolotherapy. I did some prolotherapy to strengthen the ligaments around the SI joint under image guidance. But too much prolotherapy can cause scar tissue so I only did a few treatments. My pain doctor used a tiny amount of steroid in the prolotherapy solution so that insurance would pay for it. But I have heard of cases where prolotherapy was injected into odd places and made people worse. So, I think prolotherapy under image guidance at main ligaments such as SI joint ligaments, from a doctor who knows what they are doing, is worth considering if you have ligament instability and all else fails.

So, it may be that none of this applies to you, but since you seem to have some other things going on besides the PNE, you may need to slowly over time start addressing those other issues. If you are someone who exercised heavily before PNE like I did, you also have to consider not over-doing on the exercise and just start adding things in slowly and avoiding anything that causes a flare-up in pain or symptoms.

Hopefully some men will have some ideas for you. I'm sure it must be extremely frustrating to not be able to help out with the family. My husband took care of me for many months/years while I was mostly bedridden. But I'm doing great now, so I think there is hope for you and I wish you all the best with your recovery. Please stay strong and keep fighting. You will get through this.

Violet

Hi Violet,

Thank you so much for your quick reply.

I'm reassured about you being able to sit only after 18 months. So I really got to be patient.

I did do 4 different MRIs with other doctors before seeing Dr. Conway. The only thing that doctors saw was a thinner disk at the L5-S1 level of my spine. Some mild stenosis with no direct impingement on nerves.

All of the PTs(5-6 of them) I saw all had different opinions and none had the same thing to tell me. Quite frustrating. All of the physical therapy I did prior to surgery made my symptoms worse. One PT told me I had weak pelvic floor, the other one told me I had tight pelvic floor. So I really had bad experiences with PTs. Heck even one told me just to run and that's it. It was actually an acupuncturist that told me that he thought I had pudendal neuralgia and he was right. My pudendal nerves were trapped between ligaments as per Dr. Conway's post-op report.

I do agree with you that I probably have another part of my body where my nerve is being pulled. When I lie down on my left side my genitals become extremely numb. On the right side not so much which correlates with my left side being worse than my right in terms of pudendal neuralgia/neuropathy. Also when I use a thicker pillow it elevates my head more which causes more numbness. The next day it feels like my improvements have gone away. So that would mean that by having my head elevated it pulls on the nerves somewhere. So I really need to sleep with a thin pillow but that causes me back pain. So I'm kind of stuck. Also a massage therapist also told me that I had right hip higher than the left one.

My back pain is primarily at the L5-S1 level but also upper back from lying down in bed too much. But the back pain in my opinion is from standing for over 2 years now and not sitting. Sometimes I sit for 15 minutes on the toilet seat and when I get back up I notice right away my lower back pain decreasing. So I'm sure that when I will be able to sit my back pain will decrease considerably. Also for more info when I lift something more than 5 lbs I get genital numbness more and leg numbness on both side. Another funny thing is around 3 weeks ago for a few days I had my right leg very numb but that has gone away. Dr. Conway very clearly said to me to avoid PT for a long time. Technically he told me to do nothing.

My PNE was triggered I believe from sitting too much because of work (sometimes 16 hours straight) and going to hard at the Gym.

So in your opinion just wait it out? Again thank you for your reply.

Hi Brian,

Yes, I agree with Dr. Conway that early on you need to rest and let the nerve heal. That's what I did. I didn't even start walking until 5 months post-op and then I just started out at 5 minutes a day. I also did some hyperbaric oxygen treatments post-op. There is some literature that indicates it can help with nerve healing so my insurance company agreed to pay for half of it.

It sounds like you have done a lot of research and it sounds like you have some issues similar to what I had. Like you, the PT I did before surgery was mostly making me worse. Definitely avoid PT if Dr. Conway said not to do it. I couldn't even think about doing it until a year after surgery and even then, I'm not sure how much it really helped. I think the TENS unit the PT prescribed about a year post-op helped somewhat because it calmed down the muscles in spasm - piriformis and obturator internus.

The fact that your leg goes numb makes me wonder if you have some sciatic nerve involvement. Has anyone mentioned your piriformis muscle being a problem and possibly pressing on your sciatic nerve? Mine was causing a lot of problems - worse on one side than the other - but the TENS unit helped calm it down eventually. I still get some numbness from the piriformis muscle pressing on the sciatic nerve sometimes if I sit way too long. I wonder if some orthotics would help even out your leg length and hip unevenness?

Anyway, as usual I am brainstorming too much. I'm always trying to think of all of the different possibilities and possible solutions to try. Some of them work and some don't but I think one of the most important things is to avoid anything that increases the pain and to just let yourself heal. Then you can slowly add some activities back in. The one caution I would have is not to get too impatient with the healing process and go do a bunch of invasive treatments that can make you worse. I know people who have done that before allowing enough time to heal post-op. So, unless you are in excruciating pain, beware of a bunch of unnecessary invasive treatments. Hyperbaric O2 and TENS units are completely non-invasive.

I can't do everything I could before surgery, but I've figured out enough things to stay healthy and mostly pain free. For me, is wasn't about getting completely "cured" but it was about becoming functional and being able to enjoy life and family. I don't know what ages your children are but kids are pretty resilient and they can get a lot from you even if you can't do everything you wish you could with them. And your wife.....(I am speaking from the standpoint of a woman) -- she will be OK as long as she knows you love her and you care, and that you support her in other ways even if they aren't physical. If you haven't already, and if you qualify, you could consider applying for disability to help a bit with the finances if you are unable to work temporarily.

Violet

Hi Violet,

I'm not aware of the piriformis muscle but I'm now thinking that my L5-S1 disk is pressing a bit on the nerve since I'm getting some nausea and coldness in my lower back. Thanks for bringing up TENS as I will most likely buy the device and try it.

Yeah I hope that I can live and just be able to walk and do light stuff. I don't care about the gym or being able to do extreme sports. My kids are 6, 3 and 1. So I want to be able to play with them.

My main concern is that I get the feeling that I'm messing up my back by lying down a lot and standing. Sitting is extremely important for the back to relax. So I hope I won't need back surgery or something like that.

Thanks again for taking the time to reply.

Hi Brian,

Wow, your kids are so little. You are very busy parents and I'm sure you want to be picking them up a lot which would be very difficult right now!

Your insurance should cover a TENS unit if it's ordered by a healthcare provider. I think it would be primarily for pain, or if your muscles are really tense and pressing on the sciatic nerve causing numbness, then it might help relieve the muscle spasms. If you decide to try it, I made a post awhile back that describes where to put the electrodes for piriformis or obturator internus muscle tightness -- as instructed by my PT. viewtopic.php?p=31126#p31126

Typically the pudendal nerve comes off of nerve roots S2,3, and 4 so I'm not sure if the genital symptoms you are experiencing are related to L5-S1.
https://www.pudendalhope.info/anatomy-o ... ve_Anatomy
However, a spinal radiculopathy can cause some of the same symptoms you would experience if the peripheral pudendal nerve is entrapped, so it can be a little tricky to distinguish between a spinal radiculopathy and a peripheral pudendal nerve entrapment. The other problem is that MRI's aren't always 100% accurate in determining the cause of symptoms. I have been told by an orthopedic surgeon that some people have MRI's that look fine but they have a lot of symptoms, while some people have MRI's with abnormalities but no symptoms. So sometimes you have to go by your instincts when figuring out what treatments to pursue.

Anyway, I sure hope you will be able to start sitting more pretty soon. It's really hard when you can't sit.

Violet