This is me and what happened

[Jeroen]

Hello fellow victims.

I am a 51 year old Dutch male with a fake name. After repeated searches I found this forum. I had a youth troubled by one narcissistic parent and one who was raised by nuns. I've always had transgender feelings, but put deep away. About 15 years ago I began to first recognize and then explore those feelings. At home I started to wear female clothing. I am not the hardcore transgender who never 'used' his penis or even would want to get rid of it. As a male I am attracted to females and enjoy having sex with them. But as I got more skilled in using make-up and my wardrobe increased at those female moments I did not want to get bothered with it. In my efforts to want to get the image as good as possible I started to tuck it away between my legs as far to the back as possible and wear several tight panty's to keep it in place. That way I had no bulge in my crotch. It was not very uncomfortable or even painful. But I remember I could feel it when I sat (on it). I am convinced this is what caused it.

Then came the moment in my penis I felt a little hard thing, the size of small pea only. I was immediately concerned and consulted my family doctor. I was scared this could be cancer. During the first visit my doctor was away and I had to do with the locum tenens, a young man who concluded this was nothing to worry about, just a hard spot. I wasn't satisfied and later visited my doctor when he returned. Who wasn't worried much either. No measures were taken which in retrospect I deeply regret.

At about the same time I began to have problems with bladder control. As the calcification proceeded and I was more and more unable to keep up I got more worried and asked to be referred to a urologist. The urologist ordered an MRI scan which went to be a total failure. Then it was scanned the same way unborn babies are scanned through the skin of the pregnant woman. And I was inside and outside examined by the urologist and an unnamed specialist in the matter and definitely diagnosed as Peyronies disease. The doctors found my Peyronies case very interesting, but me not at all. They could not find anything obvious wrong with the bladder and weren't bothered with doing deeper examination.

What was so interesting for the doctors about my Peyronies is, the calcification took place at about the top of the penis, just under the glans. I have what women name 'a big one' and it has a slight natural bend to the left. That did not change. Much. What happens is, during erections the glans does not get filled with blood. And during the process of the calcification suddenly I realized I lost feeling. Most if not nearly all of the feeling in the glans is gone. What feeling is left is the skin under the glans. I am not circumcised by the way.
The calcification is not painful. Sometimes I feel it a bit. If I feel it's more an uncomfortable feeling then a painful feeling.

Having intercourse has lost all fun. I really enjoyed it, often tuning my moves just on the edge of an orgasm to enjoy the pleasure as long as possible. Now I feel barely a thing and can't get over the edge. It is like playing the piano with gloves. Or having a sleepy arm or leg. When I am extremely aroused I can get an orgasm from intercourse, else not and it's boring and feels awkward and uncomfortable. I also feel uncomfortable having to confront women with my sexual and incontinence issues.

Masturbating has become hard work. Most of the time it takes me well over an hour of intense stroking to finally squeeze an orgasm which has none of the earlier quality. During the orgasm there is a sort of feeling that I could describe as a little painful or uncomfortable. The orgasm is more of a relief as that it is a pleasure. But I still have hormones so I have to. And in a strange way still enjoy it. It sounds ridiculous but on pictures I made I see my left arm and shoulder being far more developed as the right one just from the 'exercise'.

About 2 or 3 years ago I went to a sexologist to talk about the problems. I told my story about as it is written here and the sexologist discussed it with a specialist. My suggestion about the cause was plainly rejected and they were definitely not going for surgery as this would only cause more troubles. There was no conclusion to the 'therapy', I just did not hear from the sexologist anymore and I felt dumped.

I have a few real close relatives and friends to who I talked about this. It's now 7 years and I am still shocked about it. I have never been able to fully express how distressed I am with the loss of most of the feeling and sexual pleasure. I guess that's one of the reasons why I looked for a place to write it down.

[kuaka]

Welcome to the place no man wants to be.  Your story is an interesting read, and if you haven't found a Dr who actually thinks it something to be fixed, keep looking.  There is a list of Peyronie's aware physicians around here somewhere which may list someone in your area.

Keep looking.

kuaka (also a fake name...)

[james1947]

Jeroen

I understand your frustration from the doctors, you are not alone. Many of us encountered non competent doctors that don't really care about our problems or just don't know nothing about.
You should read as much as you can on the forum and start treatment.
It is late, but better later than never
You can start here:
Peyronies Survival Guide - Information for New Members - Peyronies Society Forums
What helped me most is Pentox, low dose Cialis and VED, even I started treatment very late.
I was giving a try also to Ubiquinol.
The link to the doctors list Kuaka is talking about is belloe, but don't have no one from Holland.
https://www.peyroniesforum.net/index.php/topic,4063.0.html
You can also contact Claude Schulman. Professor of Urology at ULB. Chief of Department of Urology. Hospital Erasme. Brussels, Belgium.

James

[kuaka]

James,

Thanks for providing the links.  I touch this forum quickly and don't have those saved, but I hoped you would step in with them.

kuaka

[Jeroen]

By the way it is common practice for transgenders to hide their penis. I have a transsexual friend who is deeply involved in the TG world, and she has never heard about any damaged caused.

[kuaka]

I understand that, and normally would not expect it to cause injury.  If an erection happens while "tucked", it is entirely possible to be a contributing factor.  There seem to be many.  I have about seven or eight characteristics indicative of development of PDS, and I'm quite surprised I didn't develop it until last year.  

I attribute an almost constant masturbation habit with keeping it at bay over the years, and a period of total abstinence as part of a "reboot" process from porn induced erectile dysfunction with allowing the scar to build...but that is anecdotal in nature.  With low T (about half of the low end of normal for a man my age...attributable to one non functioning testicle due to injury), chondroitin-sulfate and glucosamine supplements for 20 years, border line high blood pressure, penile injury at age 19 in a car accident and overuse of masturbation for pain management for years (resulting in porn induced ed until last year) and a couple of others which slip my mind at present, I'm genuinely surprised it took until last year to manifest PDS.

While "the" cause may be important, it is more important to figure out how to handle healing the injury.

Good luck.

[Jeroen]

I rarely was sexually aroused when I started it. Later that changed. But the primary issue was and is inner need, feeling good, not to be sexual aroused.

Been reading some of the stories in here. Guys who have pain from an erection, or even without it. Do I feel sorry for them! Am I better off? Well at least I am better off then someone with a paraplegia.