Hi all
I am looking for some advice regarding my 40 degree upward curvature.
I'm hoping to get this rectified and was wondering if it is possible to get referred from the NHS for Xiaflex treatment (ideally privately)?
I definitely do not want to undergo surgery, so this appears to be the only option I'm willing to accept.
The psychological stress from this is driving me crazy, and I'm losing sleep most nights researching ways to overcome this problem.
All advice is appreciated.
J
Hello, xiaflex is an option for acquired (new for you) curve. If you've always had this curve with erections it's cogenital and only treatment is surgery which shortens the length and can have serious side effects. Do you find it useable for intercourse? There are modifications in positions that you can use. Good support here you've come to the right place!
Hi Tsanchez
I've had it since I can remember, but I am confident that it is Peyronies and not cogential.
I remember a time when I seriously hurt my penis around the age of 12, but never really noticed anything until later on in life. I can see some plaque near the shaft of the penis which is not generally associated with cogential curvature.
Sex is not a problem, but it does make life more difficult.
Psychologically it effects me and if there is a cure without reducing size or having surgery I'm open to it. (Xiaflex)
I have mentioned it to my GP previously and he did not appear to be that bothered. However I'm going to book another appointment and insist on seeing a urologist.
I'm hoping here that I can be offered Xiaflex or referred to somewhere that can!
Kind regards
J
It sounds cogenital, but to rule out peyronies ask for an ultrasound Doppler to confirm any plaque. Plaque is not visible to the eye (thus ultrasound needed) what is it you are seeing?
I do remember it being straight before that. I've always had a tight ligament which meant my penis pointed towards my abodomen, but My penis was straight as a child (around the age of 10).
I can see a small worm like tissue that slightly petrudes the penis near the shaft. I believe this is plaque. As I become erect it moves up the penis with the curvature and always sits at the beginning of the curve. It is straight up until this bit of tissue. I will ask for a scan when I see my doctor next week to clarify this.
Thanks for your advice Tsanchez, discussing this with someone has helped me psychologically and I feel like I've got some weight off my shoulders.
J
https://www.peyroniesforum.net/index.php/topic,10432.0.html
link to my progress with VED and hand massage and stretching.
hi, also you should be able to get a VED unit on prescription from HNS, I got mine free over 60 club.
Thanks Monty
Glad to see that you've had a lot of success with the VED.
J
I think you should keep your mind open to other treatments. A lot of people here report good results with pentox. I think, I could be wrong, that xiaflex is more effective for the acute, early, stage. You seem to be in the chronic phase. I think pentox is for chronic stage. It's a lot cheaper too. Why don't you start on traction/vacuum and over the counter stuff while you are waiting to see doctors etc. If you are lucky, the curve could reduce quite quickly with traction. I know you are going through a lot, at your age you should be thinking about other things, but when you are on a treatment plan and see even minor results, you should start to feel better. Have you thought about seeing a counsellor as well? It's a pity your GP wasn't helpful. It is important to get a diagnosis though to be certain it is not something else. I wish you well.
Thanks James
I will look into getting a traction device.
Any recommendations where to get one, and how often do you need to use it?
J