Hey there

[Kodiak]

Afternoon all.

Is this a little like AA meetings? I'm not a fan of (anti) social media, so apologies if I foul up any etiquette...here goes.

I have Peyronie's, diagnosed eighteen months or so ago; I've had symptoms for over two years.

It started by me noticing discomfort with erections and then the feeling of a lump in my shaft. I went to my GP who recommended the GUM clinic for a check-up; they said all was clear but I needed to go to a urologist.

I've always been terribly embarrassed by my flaccid size, but I had a real 'grower' and ladies were sometimes amazed, but I digress.

By the time I visited the urologist my erect girth and length had reduced considerably and it was now an unsightly, malformed, horrid little thing with a 30°-40° kink. Urologist was concerned about my prostrate - which turned out to have an infection, but that was sorted - and confirmed my worst fears, which, I suspect like many, I'd self-diagnosed from the web.

His advice was to wait for a year or so to see if it fixed itself, and to find an 'understanding woman'. He strongly advised against any surgery as I am still able to have erections, despite having difficulty in ejaculating.

Utterly disheartened, I sought information on possible remedies, including traction devices. I printed some information about the 'Peyronie's Device' and took it to my GP to see if I could get it on the NHS. Whilst sympathetic to my plight, my GP dismissed my idea. I sought help from a psychotherapist for depression. All aspects of my life have been affected. I don't feel like a man any more.

After twenty-five-plus years of being a sexually active male I have withdrawn from sex for the last three years. Now, someone has come back into my life and we had an amazing intimate life when we were together years ago. I can't even contemplate in my current state even considering intimacy.

So here I am, desperately seeking any advice or treatments that might give me hope.

Sorry if I went on a bit.

[Murphyslaw]

Hi there Kodiak

I totally sympathize, the emotional hit from this horrible affliction is difficult to overcome, my sex drive has been reduced to zero.

You should visit your GP again, this time armed with as much information as possible. As you know from my first post it was only when I produced documents that outlined standard Peyronies treatment plans did the urologist suddenly become interested in prescribing something.

Regards

[Kodiak]

Hey Murph

I printed off info on the Peyronie's Device and took it with me second time; he didn't even look at it.

As for the urology specialist, as I've said, find an 'understanding' woman. Cheers old boy.

Hate to sound bitter, but I suspect this disease, having been known and named for some 250 years, if it were to (directly) affect women, there'd have been a cure by now.

[Murphyslaw]

You're probably right about that! But I think this condition has got the medical world stumped, it just has so many variables.

Your lack of help from the NHS is disgusting, but that seems like their typical response from what I've been reading on the forums.

My only advice now would be to follow one of the OTC plans you can find on this Forum. There's some great information on here and I've now added Vitamin K2 and Acetyl L Carnitine to my treatment plan.

Dont let this disease beat you Kodiak.. keep fighting and good luck


 

[Paolo]

The worst thing is there is more treatment advice information on this forum than what most Doctors know in the NHS, consensus seems to be 'live with it', which is sad  
Don't know what it is like for you but you only get 10-12 minutes tops, I mentioned my peyronie's when I was getting my blood health check, the doctor was less than interested in me even mentioning it.

The alternative seems to look for expert help in London, but at what cost, it's shameful, unfortunately, and entirely due to the nature of Peyronie's aflfication (yes that is the correct wording)  it remains woefully underreported  

[Murphyslaw]

Hi Paolo

Youre correct, this website contains far more information than I received from the two Doctors I've seen and I would have been in and out of the consultation room in less than 15 minutes with nothing had I not produced documents with all the standard treatments listed on them. Its totally unacceptable!

Regards

[Reascot]

Hi Kodiak,

Your post shows the limitations of the NHS. I'd keep harassing your GP for a prescription for pentox. You also can buy acetyl-l-carnitine and l-arginine online.
Also look into VED and traction.
They might not help, but at least you will be taking action. I resent GPs telling people to wait or "live with it". Imagine they said that to someone suffering mental illness. Anyway, rant over.

As for your sex life - perform oral on her, or use a toy on her. It takes your penis out of the equation but allows you to be intimate.

Where there's a will, there's a way.  

[Jonbinspain]

The attitude of these people is a disgrace!  Ask your Uro how he'd feel if it was his dick that was bent, shrunken, and painful!  Would be still want to 'wait and see'?  You can bet your a$$ he wouldn't!

Everything I've read and experienced tells me that the NHS is apathetic at best about the disease. The mental effects are seemingly completely ignored. Despite the fact that it has driven guys to the point of ending it all!  Until and unless anything changes, I hate to say it, but you have to go private to get anything done in the way of serious treatment.

Read all you can here. As has been said, there is more accumulated knowledge about the disease here than is possessed by 99% of Urologists. Anything you need to know, ask. Somebody here will probably have an answer

[Tychy]

It's similar in Germany.

First uro was like "ah yes, it's IPP. Sorry, I could give you a hand full of pills, but it won't do anything. You'll have to wait and we'll talk about surgery if it gets worse" - 10 minutes

2 months depressed, coping the pain

Second uro, because doubts came up: "most people don't have a straight penis. As long as your partner does not care, it's okay. I can refer you to the hospital for surgery, but you'll get infection, sensation loss or ED most likely and that will be the last erection you'll ever get." - 10 minutes

Another months of depression and pain. Started reading the forum, thought about VED. Looked up urologists who treat IPP, found one professor with enough experience in a shared doctor setting. Looked up the publications of his colleagues. Chose the one with the most interesting and complicated topics.

Went there, half an hour examination, friendly, interested. Explained everything. Scheduled Doppler. Talked about ESWT. Got prescription for VED. Went back to car and cried because of relief.

Most uros seem ignorant and uninterested in Peyronie's. But there are the ones that care and take pride in helping.  

[dever]

Just diagnosed, tentatively, by a nurse practitioner. She says I should see a urologist to confirm it. You guys don't make that sound very helpful!

As an introductory, the topic is locked.
Please continue the conversation on an adequate board