Hello, this is the first time I've used this forum. I have been diagnosed with peyronie's disease. MY systems are: deformity (multiple locations) both when flaccid and erect, pain all the time,  priaprism non emergency as not full erection (which is strange as peyronie's normally causes ED)  and no plaque - didn't show up on ultrasound.

I'm am a 28 year old with fibromyalia system since 18. I have been very active with no other health problems other than depression. My urologist doesn't seem bothered and just wants to watch and wait. I feel powerless as I can't afford private care and therefore I have to rely on the NHS.

Hi Drakey

Read the posts below and go and see a specialist in this affliction. The NHS urologists are sadly a waste of time. The best way forward is the private consultant route

Drakey,

Any urologist who says "watch and wait" is clueless.  Find another stat.  

Fibromyalgia is to me a "non diagnosis", much like "diverticulitus" was before they figured out more about intestinal bacteria.  Your nerves are unlikely "overactive".  They are likely being stimulated by SOMETHING, whether it is the presence of a substance or the absence of a needed nutritional/enzymatic substance.  In the case of the "fibromyalgia", I would look to naturapathic approaches as opposed to pharmaceutical.  Whatever is causing your fibro may also be related to your Peyronie's (PDS) symptoms.

PDS is often caused by an injury, but sometimes caused by a nutritional issue...either something there you are reacting to or something missing you need.  If you fix the fibro, you might just fix the PDS.  And I mean "fix"...not "treat".  

Meanwhile, read up here on the various supplemental approaches to mitigating/softening scar tissue and the VED and/or traction methods of reshaping which go along with them.  

While spontaneous remission has happened, it is extremely unlikely.

kuaka

Thanks for the imput guys. I have managed to get a referral to a specialist in Sheffield. He is on the NHS but he has lots of experience with peyronie's and seems interested in treating people in the acute stage.

I do feel that stretching will benefit me as I have been sleeping on the opersit side of the bend which seems to of helped.

My peyronie's is extremely senative so much so that sneezing makes it worse. Penile deformity seems to happen very quickly and easily.

Fibromyalia was caused by physical activity and I believe that physical  activity may of also influenced peyronie's disease too.

I am not able to have intercourse at all as this just makes peyronie's worse.  

I have increased my fruit and veg intake to between 8 and portions a day

Inflammation is probably the biggest issue I have right now.

Hello,
I've split your post on its own as you might more feedback. I also just need to clarify your comment that "Peyronies normally causes ED".

I don't believe this is true. If you look at and understand the cause of Peyronies there is an argument the ED might have set in first. Causing a weak erection more susceptible to trauma and therefore Peyronies.

Many people do have ED and Peyronies at the same time, and I'm sure you do. But there is no data supporting a direct connection. The ED could have already started, could now be mental (worrying about my erection therefore I don't achieve one), etc.

Hi Drakey,

Alas, you'll probably have to see him privately but Mr Minhas based in London is a uroandrologist and specialises in Peyronies. I saw him and was impressed by his methodological approach.

I'd be interested to know the name of the specialist you're seeing in Sheffield. I live in Manchester so not too far away.

As already mentioned why not start on some dietary supplements: Acetyl L-carnitine, L-arginine and coq10/ubiquinol - all of which can be bought relatively cheaply online. Have a look round the forum to see the doses other members are taking.

Best

Peety

I would add that you consider seeking Magnesium rich foods and/or a supplement of some sort.  Magnesium deficiency seems to be related to lots of fibrosis issues.

I have tried vitamin E and Acetyl carnitine but I can't tolerate them. I am  very senative to certain  drugs and supplements. I prefer getting vitamins from my food as this is more natural.

Peety Peet that guy at Sheffield is called prof Kevin Wylie and he is based at the Royal Hallamshire Hospital.

I will try the magnesium Kuala

Lee

Hi there Drakey. I am in the UK too and just diagnosed.

I was reading about fybromyalgia and found this. It may be worth a read if you have increased your fruit and vegetable intake
The GP who gave up fruit and veg to cure her aches and pains | Daily Mail Online

Aussiemike

Aussiemike, sorry to hear you are suffering from peyronie's,  It's a frustrating disease. One thing I have found useful for me personally is distraction. Distraction will keep your depression and anxiety at bay. Do your best to treat your peyronie's  but do not allow it  to consume your thoughts as there is no point in worrying about something you don't have complete control over.

In regards to the fruit and vegetables causing pain, I'm not so sure this is my problem as I never really ate much of them in the past. I'll keep an eye on it though.

All the best

Quote from: kuaka on November 02, 2015, 08:03:01 AM
I would add that you consider seeking Magnesium rich foods and/or a supplement of some sort.  Magnesium deficiency seems to be related to lots of fibrosis issues.

Thanks for the tip.

Hi Drake I'm also from the UK, symptoms first appeared about six months ago. I had intense pain when erect, a dent and at that point could feel a small inflamed lump when flaccid. After two months I gave up, smoked and the lump grew into a plaque which caused curvature. Then last month I tried traction for a few days, this has worsened things so now have ended up with 30 degree curve with slight hourglass just under the head. To be honest, although it brings me down, it could be worse and I'm glad the pain has reduced.

Anyway, I'd suggest DO NOT SMOKE, exercise, try a vacuum device. Take L-Arginine, Co-q10 among other anti-oxidants you like and stay positive. It may not work but you can at least try. If I was back in the acute phase I would most definitely try VED and book with private consultant to get hold of Pentox for the painful inflammation. So VED, Pentox, L-arginine and co-q10.

All the best