Hello from a UK sufferer

[liber]

Hi All,

I'm 52 years old, single and live in London UK.

About ten years ago i noticed nodules on the palms of my hand. there was no pain so i ignored them. Ten years later my GP noticed them and sent me to a specialist.

Last year (Sept 2012) I had surgery to remove a band in my hand and one finger (Dupytrens) somewhat successfully. I have Dupytrens in both hands effecting five fingers. I then heard about Xiaplex/Xiaflex and sourced a consultant to administer it. I had this injected with a good result to one finger on 15/6/13. I am due yet another injection in a few days, 18/11/13, to correct another finger with luck, which will leave only three more in need of straightening.

In February 2013 I had steroid injections in nodules (Ledderhose Disease) on both feet. There has been an improvement.

As the two conditions above are also linked to Peyronie's it's played on my mind for a while that I might be blighted by this condition at some time.

Three days ago (11/11/2013) I noticed a pronounced curve, more than sixty degrees probably closer to eighty and a tight band around my erect penis. With hindsight I think there has been some shortening, lack of stiffness and very few morning erections over the last two/three months? When flacid I have a slight dull ache hardly noticeable and almost certain shortening. I have an appointment with my GP in a few days time. I know it's Peyronies Disease so this appointment is a formality I will ask her to refer me to a Urologist. I have two doctors in mind, Mr David Ralph or Mr Suks Minhas. (Does anyone have an opinion who might be best to see? Or another doctor altogether). Is there anything else I should ask of my GP, treatment whilst waiting to see a Urologist?

That's it so far. Cheers for reading, John

[Jonbinspain]

Hi Liber;
What you describe certainly sounds like Peyronie's.  I doubt that your G.P. will have too much of constructive use to you, he will merely refer you to a Urologist. It is important that you ask questions before you decide on a Urologist. You certainly want a Peyronie's specialist.

In the meantime, read all you can here. There is more useful collective knowledge about this disease, and it's effective treatment, than is possessed by the vast majority of Urologists.

God luck. I would say welcome, but none of us is glad to see yet another member of this particular club.

[james1947]

Liber

steer clear of Dr Ralph in London - he only wants to operate and make money from you - I hear that Tim Whittleston in Bristol Uni Hospital MAY be an option

From:
https://www.peyroniesforum.net/index.php/topic,3529.0.html
As I had mentioned before.
Additional info can find here:
https://www.peyroniesforum.net/index.php/topic,4063.0.html
&
https://www.peyroniesforum.net/index.php/topic,3403.0.html
&
https://www.peyroniesforum.net/index.php/topic,1137.0.html
All topics found from search at:
https://www.peyroniesforum.net/index.php/board,37.0.html
It will be useful for you if you will read those topics. Takes not so long time for a native English speaker

James

[liber]

dear james

thanks for the uk links, as a "native english speaker" i had already read them, but thanks all the same.

i see mr ralph has had a few negative posts yet he seems to be the number one authority in the uk regarding peyronie's, this certainly is a dilemma.

unfortunately there aren't any uk threads that go through the stages with their urologist from first meeting and follow up appointments, many uk posters start with a negative then fail to follow up.

so if anyone in the uk can recommend a urologist that would be great as i need to give my gp a name on wednesday 18 nov. as i only noticed my condition three days ago i haven't had any time to find uk suffers and their experience with their nhs consultants.

hopefully there's some knowledge out there no matter how subjective.

cheers for reading, john

[james1947]

liber

November 18 is Monday in my calendar, nor Wednesday.
Be careful not to miss the appointment.

James

[liber]

cheers james  

18 nov i go for a xiaplex injection in my finger. 20 nov i go to see gp, i'm lucky to be in a country with free healthcare.

[james1947]

By the way Liber

Xiaflex is on the way for Peyronies. It will give answer for many of us. It is the same Xiaflex they are using for your fingers.
Have some posts on the link bellow, try to find a urologist in the UK that had good results on the trial.
Xiaflex - Trials and Treatment results - PDS - Peyronies Society Forums
Especially the link bellow, but don't ignore the other topics:
UK Xiaflex Trials - Peyronies Society Forums

James  

[liber]

thanks james

i'd already read the xiaplex information, hopefully i'll be seeing a urologist who is up to speed on its potential.

on a positive note i had a xiaplex procedure to another finger in june 2013 and the result has been fantastic so feeling optimistic for this coming dupytrens correction

john