This post may be of no interest to anyone – other than those who have come here searching for info on pudendal neuralgia, an issue I have been struggling with for over 8 years. Feel free to read on if it interests you as there precious little information out there for men on what is largely considered a ‘women’s issue’. Be warned – this post will veer into the domain of ‘too much information’ in places…
When we left home on March 31st I had pain in my right glute muscle, what my physio called ‘piriformis syndrome’. It hurt early in the day, but eased as the day went on. It was annoying, but not that debilitating.
It started to get a little worse as we travelled so I visited a phyio in SA who did some dry needling. No change… oh well…
I assumed it would slowly disappear as pains often do, but this one remained. I had a similar pain in previous years but it always disappeared. This was new.
All thru Tassie as we went for walks I would spend the first 2-3 kms in pain and then the rest would be fine as the body warmed up. However as we left Tassie and moved on to NSW I was aware the pain had increased again so we decided that when we were stopped in Newcastle for 10 days that I’d see a physio and really give it some treatment – try and sort it out. There was a whole NSW coastline to look forward to surfing and right now I was struggling to get to my feet because the pain would grab each time I’d pop up.
In the first session the physio pummeled that muscle and then the second session she hit it harder again. After the first session I was sore, but figured this was ‘healing happening’. After the second I was struggling to walk and the pain was ‘angry’. We had to leave Newcastle quickly due to Covid so when we landed in the Gold Coast. I tracked down another physio who beat me up and also used me as a pin-cushion all in the anticipation of a good outcome. I spent 4 or 5 days lying on bed with a heat pack, trying to ease the pain, all the while believing this was ‘fixing’ me.
When we left the Gold Coast for the Sunshine Coast I was at a loss as to why I was not getting better. I was now up for anything – copper bracelets, 5G signals… I was on the verge of heading for home as spending days curled up on bed reading or watching Netflix was getting old.
Then I saw a Facebook ad for a local ‘physical therapist’ who had been getting outstanding results where others had failed. I could hardly walk so there wasn’t much to lose. He didn’t promise miracles, but did suggest he could definitely make a difference. His focus was more on gentle massage and ‘working with nerves’ rather than muscles. As we chatted he told us that he learnt his skills from an old bloke in a little house in the Gold Coast. This old bloke had no special training, but he could ‘heal people’. He had healed him when others had failed, so he was ‘sold’. He became his disciple and learnt this new kind of therapy. I call him the ‘witchdoctor’ 🙂
I saw him for one session and the next day felt mildly better, however the day after was worse again. We went back 3 days later for another session. I felt better again.
Did his methods work?… I wasn’t sure, but what I noticed after about a week was that I could hobble a little and get around. Two weeks later I could walk a bit but with pain.
Then it started to dawn on me as I scoured google for answers…
For 8 years now I have struggled with ongoing pudendal neuralgia. The pudendal nerve comes out of the spine and feeds to the anus, penis and perineum. My pain was in the anus, however in researching I discovered that this other pain I was trying to resolve is often misdiagnosed as ‘piriformis syndrome’. So my theory is that what the physiotherapists had been doing was pummeling that muscle and irritating the nerve to the point where it was going crazy. They weren’t to know, as it is a very uncommon problem and few people know anything about it.
But a month on from my last phyio pummeling and I am now back to being able to walk. I don’t think the witchdoctor fixed me but rather it was just the absence of punishing massage. The pain is almost back at pre-Tassie levels and I don’t know that there is much that can be done for it other than what is called ‘nerve release surgery’.
The beauty of holidays is that you have time to actually chase stuff up, so I have been ‘Dr Googling’ and discovering all sorts of stuff. I thought I had been suffering from it for around 5 years when the butt pain began, but in reality is more like 8 years. It was around 8 years ago that I noticed that all was not well in the bedroom. I wasn’t ‘up for it’ as I used to be and I didn’t know why. So began 3 years of trying to figure out what the problem was there only to have no clear diagnosis emerge. The final conclusion of the specialist was that the issue was ‘neuropathic’ rather than vascular, but he didn’t explain it and didn’t give me anywhere else to go. I was over it so I gave up… I just didn’t know what to do next and my GP is pretty much a prescription dispenser / specialist referrer who doesn’t seem to know much. It didn’t ruin our sex life, but it meant that the sensation during sex was diminished significantly, so if you were to ask me if I would like sex or a slice of cheesecake I’d have to check what kind of cheesecake it was… Not an issue I ever thought I’d be dealing with.
But it turns out the same nerve that gives butt pain and piriformis issues can also cause problems with sex as it’s a branch of that nerve that goes to the penis… Ah… that starts to make more sense… I see what is happening here…
I joined a few Facebook groups for people with this issue to learn some more and discovered other help sources around the place. I spoke on the phone to a couple of local men who had been affected badly – one had ‘burning hot poker’ sensation thru the penis to the point where he checked himself into emergency. He was going crazy with pain so I feel quite relieved to be where I am at.
It seems this issue affects women, post childbirth most often, because the pelvis gets super-stressed, but men are also affected with causes usually indeterminate. In the end I stopped reading the Facebook posts as often they were from people in sheer agony hoping for any form of relief. It was really depressing.
What I did manage to do though is get on the scent of some help. There are a couple of Drs in Sydney who specialise in this nerve release stuff and it seems there is also one local bloke. So the next step is to go see him… Here’s a little bit about him helping a woman with no clue what was going on.
The challenge though is that not all surgeries are successful and some people end up in more pain than they were before they started down that track. It’s a dangerous dice to roll, but it could also be amazing if all 3 problems get fixed in one hit. I think I would need long service leave all over again just to celebrate!
Why write this? Because one day some poor bloke will be struggling with these symptoms and his doc will be useless and he won’t know where to turn other than google and I happen to know that blog posts of this kind rank fairly high on the google rankings.
So if you are that bloke and you’re sick of constant pain then drop me an email and I will let you know what else I have discovered since this post was written. Pudendal neuralgia is often undiagnosed and the general consensus seems to be that it is managed rather than treated. I’ve been popping drugs for 4 years now and I’d really like a different path forward as I can’t imagine living with this pain when I’m in my 80’s and beyond.
And if you’ve read this far and want to know what you may be up for then here’s a real life ‘nerve release’ surgery being done… Not for the squeamish, hence the reason its at the end of the post!
(Don’t say I didn’t warn you…)