Health Organization for Pudendal Education

Hi I'm Roger,
I'm a very fit 54 year old who has always been very sporty what with running, horse riding, cycling and loads more stuff. Some of which I still do most days.
But over the years I've had some injuries too like being thrown from a horse 6 years ago resulting in impact periformis syndrome and a torn disc at L5/S1. I had an MRI done because one day whilst still in the learning to walk phase I tried to jog a little and that night I was incontinent. Anyway MRI showed it bulging towards the cord but not touching, so I was cleared to continue rehab and get on with it. Which I did.....3 months to walk unaided and another 3 months to do a 10km charity run in 42mins. Back to full work and sport activities.
I've also suffered with sacral iliac alignment problems over the years and had the left joint put back in place many times. And a whole host of muscle spasm problems in the lower back, IT band, hip flexors, periformis.

Anyway why am I now here.........Well in about March/April this year I suddenly started getting strange sexual dysfunction problems for no apparent reason, but with no pain. Penis sensitivity loss, numbness, erectile problems, ejaculation problems etc etc. The doctor first said it was my age, then it was prostatitis, urethritis, testicular varicose veins and a whole host of other possibilities. I was given antibiotics for everything but they were of no help. I've been scanned.......both prostate and testicles and apart from the veins showing up in my testicles (which could cause the ache) there was nothing significant. Prostate tests all normal. Urine normal. Blood tests normal.

As time has gone by I have continued my sport and started to notice particularly when cycling about a month or two ago that my testicles felt like they were on fire and I now have a constant ache in my right testicle. The burning testicles subside after a while. Also when ejaculating I have an intense burning sensation in my urethra, but not when urinating. But I currently have no problems sitting down like a lot of you describe.

Last week I saw a Urologist who dismissed that it was anything to do with urology and thought that it was related to my back injury and the nerves from L5/S1 and that I should have another MRI to see if anything has moved. I saw my own doctor yesterday to discuss it and he disagrees with the Urologist. But he did examine me more thoroughly and by putting pressure on the pudenda area did replicate the same symptoms that I get when cycling and so he who now thinks it is PN or PNE.........hence why I found this web page!

My own Doc has told me to stop cycling, which I have now reluctantly done from today and he has put me on Gabapentin Capsules 100 - 300mg three times a day to see if that helps. I'm still going to the gym at the moment and none of my other exercise regime seems to particularly irritate it.........but I suppose time will tell if I need to stop anything else? But I am not good at giving in as I enjoy being fit and its good for mental health too.

What do you think? Is it Pudendal Neuralgia or entrapment? Will stopping cycling be enough?

Thanks,

Roger

Just read on another page on here that Gabapentin puts on excess weight. I don't want that tbh having just trimmed off my excess! That is a side effect that would depress me and could cause other joint problems imho.

I'm not in enough pain right now that I really feel the need to take this pain relief and having only taken 4 of these capsules so far. I'm inclined to stop now and just suffer till I can find a better solution.

But I need to ask. Is it the Gabapentin that causes the weight gain or is it the inactivity because people have stopped exercising? My wife was on Gabapentin for a while for osteoarthritis but she didn't like the side effects......but she also went to a pain management clinic and told me that most if not all of the other patients were seriously over weight. So is that the medication? Because the leaflet with the drugs makes no mention if that side effect!

Another question...........Is there any link between this and MS?

I ask as I have three older siblings. One of my sisters has MS

Roger,
I cannot answer all but I did not gain weight on gabapentin but only went up to 1500 mg a day. I was afraid of that with Lrica but was not on long and also did not gain weight and I have never been fit but know others have weight issues with slowing down. Definitely stay off the cycling and it may be good to take it easy on the exercise so you do not make things worse. Weightlifting and horse riding along with cycling can bring on PN issues. MS is one thing they usually try to rule out so you may want to check for that. Keeping your pelvic and SI alignment straight and muscle spasms particularly pelvic is helpful via a physiotherapist that is PN aware. Hopefully the UK people will guide you to those folks. Take Care
Janet

Roger, I forgot a few things like Welcome! Sorry you are having these issues but know you have found a place with much information. Please read the home page FAQs they have lifestyle changes things to stop doing, exercise that seems less impact to PN may be swimming without kicking. If you pull back on exercising and give your body a rest get some medicine and PT you may be able to keep this at bay and working early on turn it around. As for PN or PNE only the PN doctors can tell you that. As I said I was never fit but did not gain weight but know some of the others have a medicine issue or not able to adlust less calories to off set less activity? I have had to struggle with that since age 26 or so when my feet started chronic pain and of course additionally when I got PNE in 2010 at age 49. I still figure weight wise I could be worse my relatives were more overweight at this age than me and they did not have these two opposing health issues and I am at the borderline low end of overweight. The only time I was lower and probably normal was when I starved and hungry all the time not sure that was worth it! I hope you can find a way to clear up your problems then be able to start up some of the activities to keep in shape and be fit. Take Care
Janet

Thanks Janet for the welcome and the reassurance. I will reconsider the meds though I am a bit concerned that they can make you drowsy too especially for driving.

After the riding accident I did go back to it, but 2 years later I saw the light and came to the conclusion that I enjoyed being able to walk freely. So I quit whilst I still could. Also saved me a fortune!
Unfortunately swimming is not an option for me. I hate it and I'm not very good at it. I'm just not naturally buoyant Lol
Looking at the lifestyle changes page, it says stop everything I enjoy doing. Maybe I'll try easing up a little? Going to see my Oesteo/Chiropract therapist on Wednesday to get my SIJ and alignment checked and see what she says. I don't know if she is PN aware or not? Anyone know of a PN aware therapist in or near Milton Keynes? Or is there a list anywhere?

I thought sciatica was a pain in the butt.........but this is something else. I'm quite positive and trying to be humorous about it now, now that I think I finally know what is going on that is, and the fact that my Doctor has finally got there really helps..........BUT the last 8 months or so of my life has been hell to put it mildly!!! Both for me, but especially for my wife who took the brunt of it. My sudden irrational behaviour nearly ended our 24 year marriage and my life. So I am determined to make things better now for both of us!

I have read a few of the male symptom cases now and I can see many of the things that I went through and I can now understand the psychological effects this condition can impose on your mind. The Dr suggesting I read up on it and finding this page is a really big help, because as many of you have said this is not a subject you can discuss with anyone as I doubt they would understand. My wife says I should have talked to her........

Welcome to the forum and you will find a wealth of information just from looking at the different posts.

It is really hard to give up activities that you enjoy. However, not cycling for a while is the biggest favor you can do for yourself. Wait and see if the symptoms subside.

I would see if you could find a good pelvic floor PT. They can do a good evaluation and see how much of your symptoms are do to muscle spasms.

Thanks for your help myt, I will do that.
I know all about muscle spasm lol
I'm now searching for someone with the expertise in pelvic floor muscles. Had a look at the list on here but it all seems a little stacked against male sufferers. Don't know why.

Roger,
Glad you are seeking treatment and hopefully taking the adjustments to your life. I think keeping your wife and life's basic functions are great things to strife for. I know the adjustments will be tough but if this is purely muscular you have a better chance than many who have been entrapped and lapsed into pain level 10 for 24/7. I was entrapped but got sugery before hitting the worst of it. I am extremely fortunate that my husband has helped so much and stuck by me given that sex would be excruciating so that has been set aside. I am also not a swimmer and thought the chronic foot pain was tough to accept but this PNE is much more of an impact. I am now able to sit at work with a custom cushion in a wheelchair because it just fits better and I got a new wheelchair and custom cushion for home and malls, museums etc like I needed with the foot pain. I am lucky to still be able to walk for limited distances. Every case here is different and varies but the lack of knowledge, medical help and intimacy of our problem hits all of us. My doctor asked about antidepresssants in general and although I may take them to see i that helps I told her if the sugery does not help there may not be enough to help. Again luckily has allowed me to keep my job and I am slowly gaining some of my life activities. There is hope and a great group of people here to guide you.
Janet

Thanks Janet,
I can see that I am fortunate, so far, not to be in the entrapment situation. I feel for all of you dealing with that every day! And I hope I do not digress!
This is bad, but I now know it could be a whole lot worse. I therefore need to be positive and get some intervention.

So my plan so far is:-
1. Take the prescribed meds and see if they help. Ease off at the gym and sports.
2. Contact the local sports medicine place and see if they have anyone specialist in PN and/or pelvic floor therapy, as nearer is cheaper.
3. See my own Chiropractor on Wed. Check my SIJ alignment and see if she can help?
4. See my own Dr on Wed or Thurs and come up with a plan for referral so that I can get a formal diagnosis and a management plan.
5. Nearest specialist Pelvic floor PT appears to be Diane Wootton at Marlow. So 1 1/2 hour drive each way plus treatment costs