Hello everyone,

Lurker for two months, decided I just have to register today.

Four months ago I started to experience pain on erection but no visible/palpable swelling (whether soft swelling or hard plaque). Then I started to see some palpable swelling at the base of my penis accompanied by erection problems (for the first time in my life).
After that, over time the swelling has become bigger, and there is now a distinct hourglass shape. Over the past 1-2 months, I have experienced significant loss of length, about 2 inches, which means intercourse will be almost impossible.

It is truly devastating. I know I need to get this acute phase treated by a urologist with Peyronies Disease experience but I can't find one, even in the massive capital city. Urologists here tend to focus on anything except andrology. Many from this forum seem to be from first world countries where medical care is far better. All the treatments I read about on this forum are a luxury I don't have access to.

The best I can hope for is tadalafil and a simple traction device. I'm trying to compile basic Peyronies Disease information and Pentoxifylline information for my favorite urologist (open minded/good personality) who I hope might consider seriously what is happening to me.

(On that subject, btw, I tried to find the Pentoxifylline information in the Resources section but couldn't locate it, I'd be very grateful if someone could link me to it.)


I'd like to close by just saying that Peyronies Disease is the worst medical issue I have experienced in my life, and I have had surgery multiple times, quite a few ailments in my life already which required hospitalization, brief stays in ICU. The psychological factor of Peyronies Disease is severely underestimated by those who have not experienced it. I fear I will never have sex again so I would be essentially neutered. I have to do something about this but with no doctor available and no means to avoid travel and treatment by Dr Trost or other Peyronies Disease experts, I feel frightened and hopeless.

That's about it for now. Of course I will be active here always asking questions (naturally I have many). But I've rambled on enough today.

Thank you for reading and I wish everyone the best of luck in beating this horrible disease.

-Jay

Hi Jay,

so sorry to hear that you have the disease.

Please know that I have severe shortening and OCD about not being able to have penetration sex in the future anymore.

Anyway what I want to say is. I have a shortened, deformed penis and I am still able to have penetration sex.

I know it is mentally challenging to accept a deformity on your penis, but tbh many people have different disabilities and "flaws".

So I hope that you will find an urologist who supports you and who is also helping you to get surgery if necessary in the future. Knowing that there are options even if the disease progresses helped me a lot.
I don't know if you have access to a psychiatrist. I started therapy to help with my depression/OCD this disease started. I really can recommend this as 50% of the disease is the mental load.

Kind regards
T

Unfortunately things like psychiatrists are a first world thing, generally. Same as Urologists with specialization in Peyronies Disease. One consultation with Dr Trost is one month's salary for me, which I use to put a roof over my head, buy food and pay essential bills. The excess I used to save is going on trying to save myself from Peyronies Disease, first priority being a urologist who will prescribe tadalafil and pentox.

I curiously have swelling in my hands like a mild Dupuytren's contracture so I take medicines for that too. Nothing left to tell someone my problems.

I am interested to know how you have sex? I guess I should provide context. I never had a big penis to start. It was 5.5" at best. Now 1.5-2" lost and I can barely get it in the hole so to speak, and the girl feels nothing. The most recent sexual encounter, not only did the girl feel nothing, she just pitied me.

It was so sad that I'm put off penetrative sex until I can recover size and solve ED. I was just about good with 5", but now, "sex" is just me flapping my micropenis in and out near the entrance.

If you lost 2-3cm of length you must have had enough spare length to start with ?

You do have similar age to me, all I can say is it sucks. If I'm 60 or something I could be more accepting of this, but we're supposed to be in our "prime".

Hi,

I am very sorry for your situation.
Yes I was lucky and I still have a manageable length when using Tadalafil.

I totally feel with you. For me this started with 31 years. I could not believe that my sexuality would be impacted and at risk at this young age.

I hope you will find a solution that works for you. In the meantime sex toys/oral/etc. is still available. Hopefully you will find a partner who is supportive with your situation.
Additionally it maybe gives you some hope, but my deformity improved a bit over the last 3 years after the chronic phase kicked in.

Take care
T

Hello,

Stick with this group.  Use the search tab, tons of info and support here.

All the best to you.  

Hello Jay! Truly devastating for sure. We have all been there. You should definitely try tadalafil and get started immediately on traction and vacuum erection device. Those are the lines of therapy to try in your case.

Please stick with us and learn as much as possible!

Will do.

And thank you & best wishes in fighting this disease to all my Peyronies Disease brothers in this forum and beyond. More awareness should be raised!