Hello, here's my story.

[kief]

Hi all. I'm 25 and I was diagnosed with Peyronies three years ago, with a 65 degree bend and it also bends forwards. My Urologist said to leave it one and a half years, as regular erections can straighten it. Which they didn't sadly. The main symptoms are struggle getting and maintaining an erection, as well as pain at the bottom of the penis and where it curves. I have just been put on a course of Potaba, to try for a month. If that fails, my Urologist with the NHS has suggested surgery. I'm not in a relationship and haven't been since this started, as I struggle to maintain erections and when I do they are painful. Plus, there is the psychological impact I've found this disease has on your confidence with women

[Jonbinspain]

Firstly, the Urologist is next to useless. Waiting is the very worst thing you can do with this disease. There are cases of spontaneous resolution, but they are extremely rare!

I realise this can be difficult with the NHS, but if at all possible, ask to see another urologist - one who at least has some knowledge of Peyronies.

Surgery may be required, but check what type of surgery!  

In the meantime, read all you can here. There is far more knowledge about this disease here than is possessed by 99% of urologists. Which wouldn't be difficult in the case of the one you've been seeing!  

[J-A]

I agree with Jon here.

I too had a similar nhs experience. Next to useless IMO.

If you can afford it go private.

[kief]

Thank you both. I'm feeling more hopeful already. I recently asked to see a urologist in a different hospital, a much better hospital dare I say . It was with my first appointment with that hospital that they recommended I take Potaba.  I actually didn't see the specialist, as I was booked into the wrong department. In fact the guy I saw admitted he didn't specialise in Peyronies. I'm supposed to book into to see the correct guy, after I've finished 1 month of Potaba. I've also been asked to take pictures of the penis before and after the potaba.

How do I find out if the doctors in the hospital are Peyronies Specialist's? Can't anyone list themselves down as a Peyronies Specialist? If I go private, do they offer things like stem cell therapy or xiaflex, or just the same standard potaba or surgery that the NHS seem to suggest.  From what I've read plication is the surgery option with the least chance of shortening your penis but all surgeries have a chance of possible causing erectile dysfunction, or loss of sensation in the penis.

I can PM you my location and the hospital and urologist I'm seeing, if that helps. I don't want to share it on here.

[redbullmaster]

If your in the uk for the NHS you need to go to the ULCH in London, under Mr David Ralph.
Not saying your see Mr Ralph, more likely a member of his team. You need your local GP to refer you to him, but for the NHS he's suppose to be the best for free treatment.  

I've been treated under his team and I've had mixed results form it.
If you can afford private you could go straight to Mr Ralph for treatment.
Or you can use Dr Franklin Kuehhas under the International Andrology London, who I've also used.

Plication is the same as Nesbit, but under a different name. you will have shortening with it. Stage which everyone suggests will also shorten it, but maybe less so, with less compilation's.

The only surgery were you might save length is grafting, but they only do that if your bend is extreme, which at 65 degrees yours is.

But you carry the risk of ED with it, so you have to weigh that up.

[Jonbinspain]

Kief;

I think in your case surgery may well be required. I know this isn't what you want to hear, but it's been 3 yrs+ since you developed this, that means you're probably out of the active phase. Your curvature at 65 degs is on the upper side, and you are starting to have E.D. Problems.

If you are recommended to, or decide to go for surgery, do NOT go for plication or Nesbitt procedure, as redbullmaster has said. The rough estimate of loss of length with that procedure is 1 cm  for every 20 degs of curvature. In your case that will result in a loss of an inch or more. That's without all the other problems that can come with that form of surgery!

Again, as redbullmaster has suggested, if you can afford it go to see Dr Kuehhas at London Andrology. The Egydio technique is your best bet of coming out of this with a straight, fully functional penis, with no noticeable loss of length or girth.

[redbullmaster]

Would also add if your ED is already bad, correction surgery may not fix it.
If you see DR Kuehhas he may suggest surgery first, then addressing your ED if its still bad.

Which is what he did with me, the options then would be PDE-5 inhibitors (Viagra) Extracorporeal Shock Wave Therapy (not tried) or Penile Sclerotherapy (thinking about) if you have a leak.

Check FT as there's a thread on sclerotherapy there.

Each case is different so take your time before you decide what to do, May even be worth considering an implant to treat both issues at once.

But that's a big decision to think about and something to talk about with whoever you go with.

[kief]

Wonderful. Thanks a lot for your help. I think I will see Dr Ralph under the NHS and mention Dr Kuehas's procedure if we decide on surgery.  I've just looked him up and his credentials are impressive. It seems like quite a few on here have had positive experiences with him too. Just one final question, in your experience with Dr Kuehas, with him being private, is he more willing to try different medications like Xiaflex before surgery. I've just done a quick check and I think my curve has probably gone down to about 50-55 degrees, since I was last measured 3 years ago.

[Jonbinspain]

Kuehhas does administer Xiapex. However, he will advise you as to whether it's suitable in your case. Be aware that there are never any absolute guarantees with Xiapex, or for that matter, surgery.

The Egydio technique does have a more than 90% success rate, however.

As to any E.D. Problems. It may be that this has been caused by the plaque. If you do have venous leakage, then that will require additional treatment, as redbullmaster has alluded to.

[kief]

I've looked into Dr Ralph a bit more. He does offer xiaflex, as well as a variety of options, like Vacuum therapy. I'll try and persuade my Doc to give me a referral to see him tomorrow.

[itsme]

Why? Dont ppl have the ED risk with the other one too n maybe even more issues?

[itsme]

Kuehas, Lue, Lander, Levine or Egydio are the only guys to go by what Ive been reading here. Egydio is the best one who improved grafting method. Dont do any other method. But maybe u dont need surgery. Finish ur potaba but order pentox n colchicine from canada online. Pentox 3 times daily 400mh. Colchicine twp times. But start w one n increase to 1,5 after one week n then to two in the third week. Never ever take them without eat well first. These are for one to 2,5 years. Vit E daily 400 mg for three years. Dont do plication or mesbit. Many guys here have regreted that. Good luck.

[itsme]

Im about to turn 27. Please, read my advices in my profile n u ll be ok. Get pentox, vit E n colchicine n never ever do plication or nesbit. Read my profile for more details. God bless u! ;-)

[james1947]

Istme

How many success stories you know of treating Peyronies with vitamin E?
No one on the forum in any case.
Regarding Colcinine, read the link bellow:
colchicine - Peyronies Society Forums
If I were you (I am not of course) I will be more careful regarding my advice's for new members!!!

James

[LWillisjr]

This is locked as an introductory topic. Please feel free to post in the appropriate boards on the forum.