New member - 'speculative' diagnosis of peyronies - anyone have same symptoms?

[PeetyPeet]

Hi guys,

35 year old from UK with a recent (somewhat hazy, almost speculative) diagnosis of Peyronie's. If indeed it is Peyronie's, I've have had it since my mid-twenties, although despite every test under the sun, it went undiagnosed until recently.

Unlike 'classic' cases of peyronie's I don't have any curvature. The scar tissue / fibrosis appears to have developed inside the corpus cavernosa, the result being severe ED. Starting at the base, one can feel an increasing woodiness going up, which is at its hardest and most dense just below the glands. If anything, I have a twist, not a bend. When flaccid I'm smaller than I used to be and hard and lumpy. I'm pretty fit, but nonetheless I retract very excessively at the slightest exercise (or cold weather), and I can remain retracted for a prolonged period of time afterwards.

The first symptom was ED just before I turned 25. In the course of about 2 years I went from slight to severe lack of functionality. I had a tough time with the doctors who were pretty clueless and would latch onto even the smallest aspect of my personal life (so basically anything) as 'proof' that my ED was psychological. They chose to completely ignore my ED during masturbation, lack of nocturnal erections and increasing severity. It was also evident that there is no clear pathway in the NHS for ED, at least not in 2004-5. I'm not sure about now, I'd be surprised if things had changed. Alas there wasn't as much info on the web back then and I wasn't sufficiently informed to be able to nudge the docs in the right direction. I was also naïve. Self-diagnosis is discouraged in the UK and I trusted the docs to do their job.

I went private and had all the tests, 2 Dopplers, Ultrasound,  venus leak, 2 MRIs – one to check for nerve damage, another for vascular problems.  None showed any problems, but the dopplers could be considered inconclusive as the erection injection didn't take. No plaque was identified. Nonetheless, in 2006 a urologist confirmed it as non-psychological – 'something's up, but we're not sure what'.
I'm farther down the road now. The lumpiness and hardness is easier to feel. Although it's only recently that it's become more evident and hence my recent diagnosis.

From 2000 – 2007 I was using hydrocortisone 1% cream for relatively small areas of eczema on my face – probably more often than I should have – 2-5 times a week. In 2006 I started to put on weight quickly for no reason. Someone suggested I come off the cream. Almost overnight, not only did the weight drop off but I started to get nocturnal erections again (not as often nor as hard but still....). I never regained full functionality, but things stopped getting worse and I reached somewhat of a status quo which was maintained for the next 8 years. I suggested this steroid cream as a cause to my GP but he virtually laughed me out of his surgery. Still, I'm convinced the hydrocortisone had a role to play. The evidence, albeit circumstantial, I think speaks for itself. My layman's guess is that a lack of nocturnal erections, deprived my penis of oxygen / nourishment and caused fibrosis. Did the steroid cream prevent normal nocturnal erections? Well, they returned somewhat after giving it up so.....

As for things getting worse recently I'm not sure why. I have been doing a lot of cycling this past year, 2 hours 4-5 days a week. This might be fine for a man with a healthy penis, but for someone already with problems like mine? Otherwise I can think of no lifestyle or medication changes.

So what does everyone think? Are my symptoms considered peyronie's? I haven't had time to read all the topics yet so apologies if my condition is covered elsewhere. Anyone else with symptoms like mine? If so, what treatments could you recommend? I'm soon to start on Potaba although I see Pentox is popular here....

Apologies for the long post. This forum seems great, I wish there had been something like this back in 2004/5. Well done to the founders. I look forward to working with you all.

[Pfract]

Hello and Welcome! you said you "went private".... Do you by any chance know about the "london andrology institute"? the doctors there are renowned almost if not worldwide, and maybe they can fully diagnose the cause  of your ED there. Due to my situation (not peyronies, for now), i saw in these past 8 months a lot of papers, videos, and content about ED, and in cases like yours a full diagnostic is needed. As in: eco doppler, dynamic infusion cavernosometry, penile angiogram, and complete blood panel tests. After those exams, a skilled urologist should be able to tell you exactly why you have ED. (venous leak, artery blockage, nerve damage...)

Also, as Dr. Irwin Goldstein said many times on his videos, prolonged bicycle riding is a very well known cause for nerve damage and artery blockage requiring "penile revascularization surgery" if the symptoms don't fade away.

Links to videos deleted by moderator - James.
They are not relevant to the topic owner post, if he will want to find Dr. Goldstein videos, he may search on the web


Erectile Dysfunction | London Andrology Institute

[kuaka]

Cycling.  Uh, yeah.  Perching on what gets called a "seat" while doing strenuous exercise is likely to exacerbate any issues you have.  I'd jog or walk instead.  

Unfortunately, Peyronie's seems to be becoming a catch all diagnosis for penis physical tissue issues.  "Trust the experts" has gotten me nothing but trouble over the years...  Trust your instincts, and keep digging for a proper diagnosis.

[emasculated]

Andrologist is the best idea.

It sounds to me like you have corporal fibrosis which often also later leads to peyronies (we actually don't really know what leads to what...).

Strange to get this at your age and _very_ rare. Only a specialist can tell for sure.

[PeetyPeet]

Hi guys,

I'm grateful for your advice, thank you. Yes, I agree I should continue striving towards a diagnosis and an andrologist is clearly the way forward. I've noticed the specialist-list post, perhaps there's someone there that can help.

I also believe that I have corporal fibrosis, and the rareness of this condition (and my age) has clearly contributed to my lack of progress with medical practitioners. Trying to get them to engage with the idea has been pretty tricky. They just gave me another diabetes test . Cycling is out though, that's a given, and anything that can increase blood flow is in (any thoughts?).

I still my use of hydrocortisone was to blame. If only the first GP I approached had asked me to list what medication I was on. How naive I was!