Possible new sufferer looking for some help please

[Searching]

Your symptoms sound more or less the mirror image of mine. I've done a lot of exercise and been very fit since 2004 or 05ish. Started cycling a lot in late 06 and it became the love of my life (apart from my other half!). I cycled everywhere - I haven't got a car and it was the most convenient way to get around London anyway. Also did club rides at the weekend. I usually racked up between 100-150 miles per week. Also did some running and the gym. Suddenly out of the blue in June I started to experience ED and it has gone from there. I tried adjusting the bike, changing the saddle etc with no real success and for a couple of months now have done absolutely no cycling whatsoever which is absolutely killing me - it's a huge chunk of my life just gone which is mentally v difficult. I consoled myself that I could still go to the gym and was starting to increase my running and erectile function had been fantastic, in fact better than even before the symptoms started. However suddenly yesterday after the gym, WHAM, back again after a cross trainer session which has upset me a bit. Just as I was starting to settle into a new exercise regime.

My symptoms are like yours. Altered penile sensation - for a while in the summer sensation was increased so much that even whilst walking I would get turned on by my clothing. More recently erectile function had been great but sensitivity limited. I also get pain in my right testicle - had an ultrasound which was clear. This pain comes and goes. At the moment it's gone. In fact I don't get much pain - the occasional ache along the shaft of my penis and weird sensations around my anus as well as the occasional prickly feeling but nothing like the extreme pain discussed here - perhaps that's a good sign?

I'm trying to get an appt with Dr Baranowski to get this sorted. My GP has asked if I want Viagra! Or Gabupentin....

[Roger]

Hi Searching,

Yep that's exactly the symptoms.

Mine started with ED too.........sometimes I was erect but couldn't ejaculate, sometimes I was too soft or couldn't maintain an erection and sometimes my penis felt stone cold and completely lifeless. The Dr said this is normal when you get into your 50's etc etc........
Then unfortunately I went through another stage where I was beside myself with being extremely turned on 24/7! That did my head in completely and I'm afraid any logical thought or rational behaviour went out of the window!

But always a burning sensation when I could ejaculate, which I still have. But not when urinating. And yes an aching pain or sensation in my right testicle which is sometimes more uncomfortable than other times. Like you I have had every scan and test and thought the worst.
I tried Viagra and it helped when I was going through the early phase of no erection or poor erection. It also proved that the blood vessels were open and not restricted. So for me it helped psychologically. I would use it again if I needed to as its not such a big deal anymore and can be bought from most good high street chemists. You don't even need to ask your Dr for it! Go to Lloyds Chemist online!
But now I seem to have passed through that phase, as erection and arousal has returned to normal, but sensitivity varies, which of course sometimes affects the desired final outcome.

Thankfully my wife has been very strong and stood by me through some very bad times and I love her very much for doing that for me.

At the moment I'm having bike withdrawal symptoms! I've picked the running up and I'm trying not to push myself too hard......so 7 min/mile pace will have to do Lol. High reps of light weights. Any exercise will have to do to keep my mind clear. But I'm very much aware now and trying to be very careful. Because as much as this is bad, I now know from the kind people on here that it could be so much worse!

It's obvious to me now that this is PN. I'm seeing my Dr tomorrow to ask for a referral to Dr Baranowski in London, which is the nearest..........unbelievable. Also seeing my Sports chiropractor tomorrow so she has a look and checks my SIJ. Can't say I'm looking forward to discussing it with her, but this needs highlighting so that better treatment is available in more places. So I will suffer my embarrassment. But maybe she has come across club cyclists with this.......I hope so. If not I will have to go to Marlow to see the nearest pelvic floor therapist.

I feel certain that some exercise or stretching can help this. Just need to work it out. The Gabapentin is helping me, so it is worth you considering it. But I would prefer not to be on it, for fear that I might over exercise whilst on pain relief.

Stay in touch. I'm also considering inversion?

Roger

[Searching]

I get pain after ejaculation sometimes not during, the end of my penis rubs on my clothes and hurts a bit, also sometimes in the right testicle but it subsides after a few hours. I know that my penile system is still working because I still get night time erections. In fact sometimes they're very strong - I'm 40 years old but it's like being a teenager again - I've been up at night for a pee and unable to do so! I'm very disappointed that even using the cross trainer at the gym and running is affected. I did an organised 5k run lat Sat and was 7th overall our of 100 people and 3rd for my age category... I hate to think that I have no option but to lose the fitness I've gained.

Anyway, I've got private health care through work and I've arranged to see Dr Baranowski in 2 weeks at his private clinic off Harley St... Feel like I'm jumping the queue but I need to see someone about this....

What's this "inversion" thing? I've never heard of it...

Good to hear that Gabapentin is helping... How long have you been taking it? Any side effects? I sooooo want to return to cycling, running etc. My social life revolves around running, triathlon and cycling groups... It's such a chunk of my life gone. Perhaps I should just get my penis amputated and be done with it (just joking)....

[Roger]

Look at Teeter on the web. Not sure if it will be any good for bottom of the spine or not at the mo though.

I've trained and done athletic and adventure sports since I was a boy and never stopped. But I like walking too and particularly in the mountains. So the thought that this could get worse and prevent that basic of all functions is a tad worrying.

No drug side effects so far

[Searching]

I can see the Teeter website, it appears to involve hanging upside down to relieve pressure on the back. Is that right? Never come across it before... Just wondering how it could help the pelvic floor or PNE issues...

[Roger]

Yes that's what inversion is.......make like a bat. I don't know if it would help or not tbh. But right now I would consider almost anything lol. But I spoke to another sports physio place and all they could offer were nerve block injections, but I'm not ready for that!

Saw my Osteopath this morning. She thinks I need a MRI done asap.........I agree and will be pushing for it with the Dr tomorrow. Also a referral to a specialist, but on NHS as I have no private insurance and I'm retired. I've paid in the past for a private MRI after my riding accident, but I think the NHS is a bit better now.

She said my piriformis were rock hard, particularly on the left side. So she did some acupuncture and I felt the muscle release its spasm! Wonderful. Hot and cold plus stretching for a week now. She will also contact my Dr ref MRI if needs be

[Searching]

Yes that's what inversion is.......make like a bat. I don't know if it would help or not tbh. But right now I would consider almost anything lol. But I spoke to another sports physio place and all they could offer were nerve block injections, but I'm not ready for that!

Saw my Osteopath this morning. She thinks I need a MRI done asap.........I agree and will be pushing for it with the Dr tomorrow. Also a referral to a specialist, but on NHS as I have no private insurance and I'm retired. I've paid in the past for a private MRI after my riding accident, but I think the NHS is a bit better now.

She said my piriformis were rock hard, particularly on the left side. So she did some acupuncture and I felt the muscle release its spasm! Wonderful. Hot and cold plus stretching for a week now. She will also contact my Dr ref MRI if needs be

perhaps you've got to the bottom of your issues then with the piriformis release... Fingers crossed!

[janetm2]

Roger,
Glad to hear some progress for you. As for the nrrve blocks it seems they are mostly diagnostic and just a part of diagnosis. Most people start with MRI and comtinuing physio and acupuncture may be better for now. Janet

[Roger]

Ha Janet, I thought I was making progress.

Whilst the treatment helped a little it's not cured it. In fact I would say I have more nerve tingling through the buttocks now and a more constant burning sensation. So maybe by relaxing the performis it's allowing the nerves to communicate more freely and therefore exposed the true cause.........PN?

My Dr. can't order an MRI for anything below the lumbar! Has to be a specialist referral.

So he has agreed to refer me to the pain management clinic at UCL where Dr. Baranowski is. So I will have to wait patiently now. I rang them and discussed private but the guarded opinion (off the record) was yes I could see him but to get any diagnostics done at the Neurological Hospital and have access to all that they can offer I would still need to be in the NHS system at their facility. So there is no short cut really.

So there you go.

I will still explore pelvic floor therapy. But I'm not sure I want to start that before a diagnosis or not? What do you think? Will it over complicate things?

[Searching]

Ha Janet, I thought I was making progress.

Whilst the treatment helped a little it's not cured it. In fact I would say I have more nerve tingling through the buttocks now and a more constant burning sensation. So maybe by relaxing the performis it's allowing the nerves to communicate more freely and therefore exposed the true cause.........PN?

My Dr. can't order an MRI for anything below the lumbar! Has to be a specialist referral.

So he has agreed to refer me to the pain management clinic at UCL where Dr. Baranowski is. So I will have to wait patiently now. I rang them and discussed private but the guarded opinion (off the record) was yes I could see him but to get any diagnostics done at the Neurological Hospital and have access to all that they can offer I would still need to be in the NHS system at their facility. So there is no short cut really.

So there you go.

I will still explore pelvic floor therapy. But I'm not sure I want to start that before a diagnosis or not? What do you think? Will it over complicate things?

Are you still taking the Gabapentin and if so is it still effective?