22 years old suffering with Peyronies Disease

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JimLe96

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
Age: 24
Congenital curvature.
Noticeable band/nodule about 1/4 of the way up the shaft - diagnosed as chordee
Symptoms: curvature (35-40 degrees)

TonySa

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!
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

JimLe96

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

Age: 24
Congenital curvature.
Noticeable band/nodule about 1/4 of the way up the shaft - diagnosed as chordee
Symptoms: curvature (35-40 degrees)

TonySa

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?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

JimLe96

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
Age: 24
Congenital curvature.
Noticeable band/nodule about 1/4 of the way up the shaft - diagnosed as chordee
Symptoms: curvature (35-40 degrees)

Monty

71 UK, ED from 2011, unable to get full erection, Peyronies Disease from  2015 acute bend to left, VED & hand traction + 20mg of Tadalafil twice a week, or when i'm feeling lucky, forum member November 2017. Fav Film&Song, TheGoodTheBadThe Ugly. A Day in the Life

Monty

hi, also you should be able to get a VED unit on prescription from HNS, I got mine free over 60 club.
71 UK, ED from 2011, unable to get full erection, Peyronies Disease from  2015 acute bend to left, VED & hand traction + 20mg of Tadalafil twice a week, or when i'm feeling lucky, forum member November 2017. Fav Film&Song, TheGoodTheBadThe Ugly. A Day in the Life

JimLe96

Thanks Monty

Glad to see that you've had a lot of success with the VED.

J
Age: 24
Congenital curvature.
Noticeable band/nodule about 1/4 of the way up the shaft - diagnosed as chordee
Symptoms: curvature (35-40 degrees)

Cowboy James

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.

JimLe96

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
Age: 24
Congenital curvature.
Noticeable band/nodule about 1/4 of the way up the shaft - diagnosed as chordee
Symptoms: curvature (35-40 degrees)