Not being diagnosed with Peyronies Disease, but would like some advice.

[luke87]

So this all started about 3 months ago - I'd been out and a for a few drinks, came back and had quite vigorous sex that last a couple of hours. The following day I had the usual "penis ache" (for lack of better words), but this lasted for about a week.

About a couple of weeks after this, I began to notice a small lump about 5mm on the left side of the top of the shaft of my penis underneath the skin, and another about 20 degrees clockwise from this. There was some moderate pain during sex, depending on the position I was in. But it wasn't at all bothersome whilst flaccid (and it still isn't to this day).

I went to the doctors and got it checked out, got told it would be extremely rare for it to be a cancer, due to nothing being visible on the exterior of the penile shaft, and he put me through to the NHS to get an ultrasound. The specialist who did my ultrasound said he wasn't sure what it was, but to keep an eye on it and come back if my condition got worse. A couple of weeks passed and they got in touch with me to tell me that they'd looked at the results of my ultrasound, and that they'd like me to come back in to see a urologist.

At the time of going to see the urologist the lumps had got a few millimetres bigger, and there was a curvature of 10-15 degrees in the direction of the lumps. I wasn't really happy with how the consultation went - I had trouble communicating with him properly, and I don't think I conveyed all the details to him as accurately as I could have done. I'm saying this, because in the letter he sent back to my doctor it said that there was "no history of trauma", and that there was "no pain during sex". I couldn't remember if he'd just not heard me say this, or if I genuinely forgot to tell him exactly how it happened. He didn't seem very sincere about my situation either. Anyway... He had look at the bumps and told me that he was going to book me in for a biopsy - a full excision.

Another few weeks passed and I began to notice another lump under the penile shaft, this time it was a bit further down and on the front. I had noticed a pain where this lump is merely a few weeks after I first started with the symptoms but this is the first time I've noticed a lump there. I should have already mentioned, but both the lumps are painless to touch, and they don't move. They're consistent with Peyronies Disease and it feels like it's probably a plaque.

At this moment in time, both the lumps have got slightly bigger and have merged in to one, the curvature at the top left of my penis (where I discovered the original lumps) is now about 20 degrees. I'm booked in for another consolation because of my condition worsening, but that's not until January. And I have no idea when my operation will be - I was supposed to be high priority but I got told that could also be around January.

I've done a lot of reading about the various research and studies regarding Peyronies Disease, and I've got some ideas of various self help techniques and medications that I'd be willing to try. But when I was on the phone to the NHS, they did say that there wasn't enough research and that I wouldn't be prescribed anything. Right now I'd just appreciate some advice in terms of what I can do rather than just sit here and wait.

I have a few questions belo. It would help ease a bit of my anxiety surrounding the (what I believe to be) Peyronies Disease, If I could get some answers to them:

• Is it worth going back to my doctors to ask him for something specific for him to prescribe me?
• I've heard of penis vacuum pumps sometimes being effective at breaking down the plaque?
• Should I be more careful whilst having sex for the time being, can it be irritated and made worse?
• Would it be worth me seeing a Peyronies Disease specialist and if so how much do they cost in the UK? I do work full time but I'm not sure if I could afford something like that.
• A study I found online that proved very successful featured a combination of these prescription and non prescription drugs. Would something like this be possible for me to try? "The first is a medical therapy with Pentoxifylline, plus Vitamin E, other antioxidants (Flavonoids) and local gel Diclofenac 4% for 6 months"

Sorry about the length of this post and potential lack of information. Thanks in advanced for any help.

[kuaka]

Start here.

https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html

A humorous and informative talk on penis anatomy.  This will help you understand what is happening, by understanding how it is supposed to work.  It will also help you talk to your Doctors.

http://www.ted.com/talks/diane_kelly_what_we_didn_t_know_about_penis_anatomy

Dr's members here have experience with.

https://www.peyroniesforum.net/index.php/board,37.0.html
https://www.peyroniesforum.net/index.php/topic,4063.0.html

Dr's who have published papers in this area of expertise.

http://expertscape.com/ex/penile+induration

Nutritionally, consider that you might be Magnesium Deficient.  Peyronie's (PDS) is a fibrosis condition, and most such conditions seem to be associated with Magnesium Deficiency.  Modern farming techniques strip Magnesium out of our food supply.  Magnesium Chloride is a good place to start.  Injury may start the scarring process, but Magnesium Deficiency can contribute to it as well.

Traction and VED (Vacuum Erection Device) are both tools in this battle.  Old Man is the resident VED expert.  In either traction or VED, caution is important.  Introduction of "new" injury will only make things worse.  The "plaque" is a bit of a misnomer, as we tend to associate plaque with dental plaque and miss the point.  It is a solid mass of scar tissue which interferes with the proper expansion of the Tunica, causing pain and deformity...essentially the definition of Peyronie's.

Any Dr. who says "wait and see" is guilty of malpractice in my opinion.  The incidents where this issue resolves itself are extremely rare.

Good Luck,

kuaka

[luke87]

Thanks for the information Kuaka, I'll have a look through all of that when I get time.

As for the Magnesium Chloride -  I've seen the flakes that come in big tubs for around £5-10 per KG, which are intended for use in the bath only. Is this something I should take orally or applied externally? What are your recommendations?

[kuaka]

Here in the US, it can be found in pill form at Walmart...and I'm sure elsewhere.  I would not use the bath flakes internally...but I'm not sure how much good they will do you unless you soak in a very hot tub for long periods of time.  

[Gutted]

Luke

Kuaka has covered everything by way of introduction and done his usual great job...

I can add one thing ... I spent a very long time researching Urologists in the UK. THE guy to see seems to be Dr Suks Minhas

As with many specialist Consultants, he does NHS work as well as having a private practice if you find you need to go down the private route.

I don't want to appear like I am 'marketing' him and I have no commercial or any connection to him of any type, so I won't say anymore. You can Google from here on in and I hope I have saved you some time !

[Jonbinspain]

You almost certainly have Peyronie's disease, from what you've described.

Yes, find a competent, and I stress competent Urologist. You need to start fighting back against this now. Do NOT listen to anybody who tells you, 'let's wait and see'

You may well have to pay to get an early appointment, but trust me, it may well be worth it.  

[lonelyboy]

Hi Luke,
You should be able to get referred to Mr Minhas (I think its called a tertiary?) on the NHS, I did (nice man and the others on his team) I'm still struggling to communicate effectively though, but have recently found that not moving from the clinic seems to make them offer whatever is needed to get oneself out of the room ;o)
Good luck

[luke87]

Thanks for all these replies. Very helpful.

Lonelyboy - how did you get this referral? I'm just wary of doing this because wouldn't it mean having to cancel my upcoming consultation and operation (the excisional biopsy, which I'm VERY apprehensive about)?

I'm with a urologist in Leeds, St James at the moment, but he's never around to speak to, it took me 5 attempts and 4 weeks to get through, and even then I had to speak to someone who was just filling in for him...

[LWillisjr]

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