Canadian with Peyronies and very little faith in our healthcare system

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rockwatern

Hi all,

I wanted to introduce myself since I'm a new member here. I'm a 35y/o male who has been dealing with the onset of peyronie's for the past year and was diagnosed with it about 6 months ago. I've previously had deupetryn's in my 20's on my left hand which was treated with Xiaflex (when it was available in Canada) and i believe I've plantar fibrosis on my left foot which has been inactive but present since childhood.

Initially when peyronie's started, I was getting intimate with a girl that but ended up having ED at the time, which for the most part, is pretty unusual for me. Following that, when I was using the washroom i noticed a 'lump' deep within my penis shaft and which upon touching ignited a severe episode of prostatis/urethritis which essentially stuck for almost a year during the entirety of he acute stage while peyronies was forming.

Currently my peyronies has developed on the top side of my penis forming just below the head of my penis wrapping around the shaft which has resulted in a (im guessing) 25-30 degree curvature, and I've lost some length and girth because of this.

As i can imagine a lot of members here, this took a serious toll on my mental health. Not to mention from the pain, and the fact that i pretty much felt unlovable for a long length of time. Fortunately through therapy, I've come to terms with my condition and can still say I'm happy and thankful, as this experience has taught me a lot about myself, but at the same time I have little faith in the Canadian health care system for the following reasons:

- It took me 8 months to properly get diagnosed. Not knowing what was wrong with me was one of the hardest things to deal with.
- There's no Xiaflex available in Canada, open surgery is the only treatment
- No one truly helps you or even cares (perhaps an anecdotal thought here)

It seems that I am in the chronic stage at this point, and my penis functions more or less normally (i can have sex), but this has been a pretty big blow to my overall confidence, and to be honest I really dislike the way my little guy looks now as I used to be pretty self assured in this department.

What I hope to learn through this forum as it looks like this is a very much welcomed and needed resource, is if and how I should seek treatment given my current situation. As i mentioned I've had Xiaflex treatment for my hand which was about 90 degrees, and had amazing results from it, but this treatment is no longer available in Canada. Fortunately i have the option for to receive Xiaflex in the states, but i know there's risks. Regardless I want to figure out what type of treatment is best for me.

Thanks for reading!

- Norm
 
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Sonic

Quote from: rockwatern on June 01, 2023, 02:07:06 AM- It took me 8 months to properly get diagnosed. Not knowing what was wrong with me was one of the hardest things to deal with.
- There's no Xiaflex available in Canada, open surgery is the only treatment
- No one truly helps you or even cares (perhaps an anecdotal thought here)

Welcome to the forum norm. The highlighted part of your post basically sounds like copy of swedish healthcare. I can only say I share your feelings and most of us do, this whole spectacle is definitely tough for the mental health. All I can say is you basically only have 3 options. One is trying the oral ''treatment'' route which would consist of daily tadalafil 5mg or daily Sildenafil 50mg. The other two options would be trying out a traction device, which is a big hassle but can give results. Third option is a good quality vacuum pump to train the penis with everyday.

Other than that there basically are no options besides surgery and surgery always need to be discussed very carefully with the doctor beforehand because it's really not suitable for everyone.. I'm personally 3 years into the disease now, have lost significant girth, and doctors have done nothing and tell me surgery is not ideal for me. It's a really nasty condition this peyronies.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

zoned999

Where do you live Norm? you have to go to a private clinic in Canada. BC and Quebec i think are the only ones! They can get you straightened around for the most part. I'm dealing with the same thing as you however I went in within 1 month of onset... self diagnosis and so far am totally straight, small hourglass, no pain flaccid but pain still on erection which im hoping eventually goes. Im clearly still in acute stage as its been just over 3 months from onset. Ive had many different injections, pills, traction, pump etc. They treat it aggressivly! The only way I'm going into the hospital here in Canada is on a gurney! The private clinics are super expensive but there are absolutely no other options! Lots of doctors know about peyronies but they generally don't have the resources to deal with it about it and they are told it's not a significant health issue. I've been told by my doctor that he suspects it could affect as many as 30% of men 17 to 75 in one form or another, mostly of Scandinavian decent!🤷🏼.
47, married. Noticed lump with pain, Diagnosed March 2023. 1cm Plaque in septum. Suspected repeated injuries. No curve, slight indent, painful daily with good and bad days. In intense treatment.