Newbie Seeking Answers!

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Hi All,
Hopefully some of you may have some advice for me. I suspect I have a PN issue.

To explain my situation, I have been a keen cyclist since 2007. I (used to) cycle to work and frequently do club cycle rides at the weekend, this amounted to some 100-150 miles per week. I never really had any problems until last year - I did a 100 mile ride and upon my return found that my penis was numb and dysfunctional. The following day it was fine again and I began cycling to work etc without further issue. Later last year I cycled to Paris from London and had the same issues and again later in 2012, after a 120ish mile ride. It seemed that the issue only arose after 100+ mile rides, otherwise things seemed fine. Until this year.

I started the year with relatively little cycling - the weather was bad and then I managed to break my arm, so I didn't really get going until March which is unusual for me. I quickly began to get fit again but then in mid May I started taking celery seed as a health supplement, I was simply experimenting, it supposedly increases blood flow and relaxes muscles. A pleasant side effect was that it seemed to massively increase sexual appetite and ability. It was astounding! However later in May I started to experience unwanted and frankly painful night time erections that wouldn't go down unless I got up and walked around.

Then suddenly at the start of June after a normal week of riding I could no longer get an erection at all for a few days. It happened suddenly - literally overnight after a weekend of normal riding. I stopped cycling and things seemed to get better. Since then I haven't been able to cycle much without onset of similar symptoms. Even cycling to work (about 6-7 miles) causes problems. I get general numbness in my penis and find erections can be impossible or difficult. I sometimes get pain in the penis and also since around August, occasional pain in my right testicle. Also my anus feels strange - not painful just like there's something stuck there perhaps.... Sometimes sensation in the penis returns and it gets very sensitive, other times it's considerably less sensitive.

I also occasionally get night time "spasms" in what I assume is my pelvic floor accompanied by unwanted erections. I can almost feel the muscle pumping my penis up. I have to actually wake up and consciously think about relaxing and then the spasms stop and everything goes down so to speak. I have tried a lot of different saddles, with cut outs, without cut outs, ISM Adamo saddles, I even bought a Nexride saddle which has no nose at all - it seemed to make things worse! So far the ISM Adamo Prologue seems the best option but even with that after commuting for 3 days, the symptoms are back

Sorry to be so graphic but I'm running out of ideas... I don't know where to turn! In general reading this website and others symptoms sound familiar to what's been described. I've been to my GP, had ultrasound on my testes, blood tests, urine tests etc for prostate problems etc but nothing is showing up. My GP has told me to keep on cycling....

Finally my GP has referred me to a urologist so what I'm trying to work out is if there are any urologists that have knowledge in this area - I've seen the suggestions on this site but are there any others people have had good results from? Physiotherapy seems to be a suggested route for recovery - has anyone seen any good ones? Most of them seem to be women and perhaps treat women only. Is this the case? I'm really keen to find someone who understands and can possibly diagnose this condition properly, if this is what I am suffering from. I live in London so can't easily start travelling to places like Nantes or Bristol which seem to be popular locations.

Lastly, do people recover? Is it possible to start cycling again? Cycling is/was my passion and my main method of transport - I am going mad without it. Thanks for reading.... Any help would be very, very much welcome...

[janetm2]

Welcome,
I would suggest checking the symptom list off the homepage to see how many you have. Also FAQs have a wealth of info like stopping or restricting sitting and especially I would stop cycling at least until you get a handle on what is going on and see if you can recover. Physio is a good idea and there may be listing off homepage or in UK section and the other UK members will probably give you advise on Doctors etc. GP is clueless if he said to keep cycling, sorry but that is one of the causes. It may not be forever I think someone found a seat but then someone just thought they were cured 4 months no pain cycled and flared (hoping no permanent damage setback but she may decide now to stop the cycling. I am sure more info will come from othets but felt I had to guard against the cycling, certainly your choice. Take Care and good luck.
Janet

[flyer28]

agree with Janet, stop cycling immediately, this might be very dangerous...
average urologists are absolutely clueless with this situation, I was also heavily dissapointed
start with some experienced PT, who is able to exam whole pelvic floor, your situation might be completely reversible, and I am sure you will endure some year or two without cycling compared to danger which is around the corner...

[molly]

I totally agree with the others, stop cycling until you get to the bottom of this. As you have probably learnt this is a ghastly condition, that is very difficult to treat.

My suggestions are either a referral to Dr Baranaski in London, who is one of the few pn doctors in the UK, or a pelvic floor assessment.

Maria Elliot springs to mind in the London area, have,nt seen her personally, but I believe she very good with a lot of experience in this field.

I,m also in the UK, a long term sufferer so feel free to ask me , I,m not an expert but will try and help if I can.

Regards Molly

[calluna]

The person to see in London is Dr Andrew Baranowski. You'll find his contact details here, and you can get an NHS referral from your GP.

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Thanks for all your help on this. Symptoms persist and I'm seeing Dr Baranowski in a couple of weeks (privately)....