A rare male sufferer

[CotswoldCyclist]

Hello everyone, after a few months of reading I finally found what appears to be a UK based forum for pelvic pain.

Here's my story (very briefly)....I'm a 52 year old male who has been cycling in the region of 7 to 8 thousand miles a year and in May this year I became aware of a lump type feeling in my perineum. Prostate checked out fine but things gradually degenerated pain wise to the point where I stopped cycling 4 or 5 weeks ago.

Bikes are a huge part of my life and it's all been very depressing. I pretty much self diagnosed pudendal neuralgia after recognising symptoms in a medical paper which used an Ironman triathlete as a case study.

I'm seeing a physio who is a women's health expert in pelvic pain and she agrees I have some compression nerve damage and hypertonic pelvic floor muscles. She has had me stretching my piriformis and doing relaxation exercises but the nothing is changing. I'm having a brief break from stretching as I feel it's making it worse. Symptoms are rectal ache, a sensitive penis (sometimes it feels like it's buzzing, really annoying) and perineal pain when I rub there.

So, is there any hope for me getting back in the saddle eventually?

[clancemandoo]

Mine started the same way and I made progress over the last 5 yrs but had a cystoscopy with botox to improve urinary flow and have been in hell since (coming up on 2 yrs). I can't even sit without pain so my advice to you is be very careful about invasive procedures if they are suggested.

[CotswoldCyclist in reply to clancemandoo]

I've already decided this is very definitely not going to end in surgery. Everything I've read suggests that it just doesn't work and very often makes things worse.

[Konagirl60 in reply to CotswoldCyclist]

I am sorry to hear about your story. I have come to learn that cyclists get this BUT so do many other people.

The pudendal nerve has three branches and they can all be stretched from overuse during cycling, long distance commuting and other athletic pursuits.

TOO MUCH STOOPING ( bending over my groin ) caused by

1. being a ballet dancer for 12 years,

2. an avid downhill skier for 15 years,

3. being a gymnast for 5 years

4. traveling with a 30 pound backpack for a year,

5. bagging 50 bags of leaves every Fall

6. planting flowers, bushes and shrubs,

7. carrying babies and toddlers for years

8. Working at a job where stooping was a great part of the work as well as lifting boxes off of the floor every work day.

9. Commuting long distances regularly for work and back home AND

10. due to post operative complications ( scar tissue from C-section, two laparoscopies, tubal ligation surgery with metal Filshie clips )

made my sacrotuberous and sacrosphinous ligaments overstretch and start gripping my right rectal branch of my right pudendal nerve. It was an indolent forming condition that started with faint rectal spasms that were intermittent and after two years one day I COULD NOT SIT.

My doctor thought it was IBS. I never had bowel issues. Even though stool samples had no occult blood in them, my doctor suggested a colonoscopy because I was almost 50 years old. BIG MISTAKE! Within ten months I could no longer sit AND both metal Filshie clips used in my tubal ligation had migrated. One was on my rectum for nine years and the other was embedded in ileum bowel for ten years!

I had the surgery and it saved my life. It worked. I am very lucky to be alive. I suffered for years due to medical neglect, incompetence and fraud. I pray you find relief because this is painful and it will make a person feel ‘stuck’. Good luck

P.S. Childbirth can stretch the nerve to! DOH!

[Hidden]

I've suffered with Pelvic pain for well over 14yrs. Recently I seen a very good pain specialist who referred to my pain as Sadle pain as if I had always rode a bike ( no I haven't) because it goes all under them private areas.

His suggestion was two Ganglion nerve blocks,with about six months apart. Well I only had the one,but I didn't feel any better for it,so I never had the other one,much to my regret,because he said it would take two.

I now see a woman's Physiotherapist,I have all my hopes on her.

What I'm trying to say here is,there is such a problem called Sadle pain from riding a bike. And my suggestion to you would be,if you don't fancy investigating the nerve blocks,go for a MALE Physiotherapist. My woman's Physiotherapist told me only women know best when it comes to women and Men know best for Men. Hope I've been of some help.🍀

[costagran in reply to Hidden]

its not rocket science is it.

how can a man ever know what its like going through the menopause or giving birth or having severe period pains.

how could we women know what its like to get a kick in the balls.

[Hidden in reply to costagran]

You tell me how your bloody Sarcasm,has helped the gentleman above that's in pain. I think if that's the best you can do you should go back to school.🤔

[lucyp in reply to Hidden]

I don,t know where you live in the UK guess it's round the Cotswolds.

There is a very good male physio based in Edinbrugh called Bill Taylor.

David McCoid is a fellow sufferer and has since extensively researched the subject and now offers programmes via internet packages based on movement.

Hope this is helpful.

Lucy

[CotswoldCyclist in reply to lucyp]

Hello, sorry for late reply but thanks for the info and the name, I'll certainly bear it in mind.

[seeMealive2]

Pudendal pain is more prominent in males--and cyclist--from what I am learning about the Pudendal nerves. I've been suffering for 8 years with the damaged nerve pain --left side crease in the going--probably caused by the type of hysterectomy I had. Currently found Dr. A.L. Dellon and probably going to have a procedure to have the nerve (one of three) cut to release...not sure if he actually called in 'decompression', but most procedures for this refers to it a lot. He will go in from the front for me..closer to the site of pain. MOst are done through the rear. Please do more research about the Pudendal Neuralgia---I think you are right on track! GOOD LUCK!

[CotswoldCyclist in reply to seeMealive2]

Thank you. Things do seem to be improving, see below. However, one thing I do know is that I won't be having surgery. I don't believe things are so bad to justify that. If it doesn't go away I'll just have to accept cycling isn't for me any longer.

[Pelviccrusader]

You cannot know for sure if you have nerve damage until You eliminate hypertonicity. The tight muscles Will strangle the nerves causing an apparent neuropathy. My suggestion would be to find an expert in manual release of the pelvic floor. I have gone through the same thing, also a result of too much bicycling which also was a huge part of my life.

After seeing a huge number of physical therapists without luck I did manage to find Elizabeth Rummer In Boston and Gabriela Van Sickle In Rockville Maryland.

I realize you are in the UK but I hope this information helps.

[CotswoldCyclist]

Thank you. I have come to realise that I have been gripping for a long time so I have no doubt there is an element of hypertonic muscles. I am now seeing someone trained in ART but he has started with getting better movement in my hip flexors which he believes are tilting my pelvis forward. I'm stretching piriformis nd obturator internus daily as a general 'good thing' to do exercise.

I had an MRI scan yesterday so I'm waiting to see what that shows.