My Peyronies Nightmare

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rich

Hi I have been quietly reading for a few months now about your experiences and similar issues to myself and thought it is about time to introduce myself
I live in Southampton England and I'm 49 years old I have led an active life and until an Achilles rupture a year or two ago I was into body building so I watch my diet and weight and don't drink or smoke.
My issues started around January 2021 when I felt lumps on the left side of my penis in a couple of locations. I was also struggling with erection issues and lack of feeling on penetration, at first I had put my issues down to low testosterone so eventually got referred to Rowland Reece in Southampton general hospital.
In England getting any assistance with low testosterone is very difficult, so on my visit with the doc I pushed heavily for assistance in this matter and to my surprise he passed me to a colleague to help with that.
He advised me that I had peyronies disease and I was to use a vacuum pump and there was nothing more that could be done until a year had passed, and the plaque had fully formed.
So my journey continued which I thought was a low testosterone journey at that point, so a long story cut short eventually I opted for private trt in which I was prescribed testosterone cypionate along with HCG (Human Chorionic Gonadotropin) and 5ml Cialis daily.
So after finally getting my levels correct and with the help of Cialis I started getting morning erections and a feeling of normal sexual function, it was only around then I started realising how much the bend was getting worse as before then I wasn't getting erections at all.
I had tried with the vacuum pump before, but I found it had made me sore around the scrotum and was affecting my eczema in that area. Also on a mental note I had found that I was abstaining from any sort of sexual or physical contact with my partner. And so using the pump was also having a mental effect on me as my partner was also going through this difficult time even though she was understanding and not putting any pressure on me.
So rolling on to today I now have a 70 to 80 degree bend and I would say without Cialis I have erectile disfunction too but I'm not sure if that's down to testosterone or not.
It felt like pulling teeth trying to get my next appointment for Dr Rowland Reece which is now on the 19th of July which is what pushed me forward to speak to you guys as I need to make some decisions.
After reading a post before that one of the forum members wasn't happy with his treatment from Dr Reece, I have been considering other options for doctors and even thought about traveling to the us for surgery.
I'm also wondering if my best option would be just to go for an implant straight away to avoid any of the complications it seems the other operations have.
Thanks for reading my first post and I look forward to any help you can offer especially with doctors in England, I have been reading the post from jimmi85 which has had some good to say about dr ralph so maybe I should investigate that option too.


49 years old,70 degree bend diagnosed jan 2021.erectile dysfunction but helped with trt/cialis.

Pfract

Hey Rich!

I am glad that you reached out for us. It takes courage some times to open up about things and this is one of those issues. It is very personal and the way it affects us and our manhood.... it hurts. It is unfortunate that your doctor told you to wait and said there was nothing else that "could be done". It is simply not true. Have a look at this link, to see what the current state of the art recommends when it comes to addressing Peyronies. https://malefertilityandpeyroniesclinic.com/peyronies/treatments/ One should be proactive from the start. Traction and/or VED along with low dose Cialis are recommended in the early stages of the disease.

There are a lot of members here that are having very good results with Restorex. https://www.restorex.com/ They are not shipping directly to Europe, but you can use a parcel forwarding service to get your hands on one.

It is a very good thing that you are on TRT already as having good erections is a must as well.

So... you can follow the VED protocol in the board with traction, or you can choose to pursue the surgery route which will come with it's own set of risks. Conservative therapy should be tried first and foremost. You should also know that there are penile implants out there, that treat virtually all ED cases so you will always be able to have a sex life, and in the case of the 3 piece implant it will be of very high quality.

Please fill up your signature line so guys can help you better, and stick with us.


Muttley


Quote from: rich on June 23, 2022, 08:01:45 AM
I'm also wondering if my best option would be just to go for an implant straight away to avoid any of the complications it seems the other operations have.
Thanks for reading my first post and I look forward to any help you can offer especially with doctors in England, I have been reading the post from jimmi85 which has had some good to say about dr ralph so maybe I should investigate that option too.

Hi Rich, I asked my GP to set me up with an NHS appointment with Prof. Ralph at UCLH. That worked and I saw him about a month ago. He does have a private clinic as well by the way.

Re Implant:
I have a 70-80 degree "very distal" bend upwards and prof R has offered me either a  Plication (Nesbit) procedure  or incision and graft. He has informed me about the risks of both. Although 70/80 degrees is usually considered to be too severe for a plication he does not believe  (in my case at least) that I would lose much length from a Nesbit and that it would provide me with a good solution. As such, I am sure that it would be worthwhile you seeing him in case you might be able to have plication as well(should  that be of interest to you).  
Late 50s
Nesbit Procedure July 2023 which was successful
Official diagnosis 12/2021: Bend at the end @70 degrees upwards/@35 left

Patience39

Hi, I am in a similar position.

I am a 39 year old male and was also seen by Dr Rees. For the amount I paid, the diagnosis was very limited and he literally looked it over for around 1 minute and then told me to wait and see and invest in a pump and see what happens. For a guy professional in his field, I was very frustrated..it took a lot of courage for me to see him and I felt very let down.
Since, I like you have used a somacorrect pump and I am constantly in pain since using it. I am new to it, but I do follow the protocols correctly and do not overpump.

I am wondering if it gets worse before it gets better, as the loss of feeling down there, the constant pain is making me question about stopping.

I feel for you as your story mirrors mine.
39 Yr old male. Plaque curvature at 25° last October. VED somaerect, progressively getting worse.

rich

Hi Guys
Thanks for your reply's and input into my dilemma, i have just called my gp to book an appointment for Friday to start the referral process to prof ralph.
I called uclh (university college London hospital) on 02034479190 and was told if the referral comes now they can see me in august so i will probably see what Dr Rees says and then get a second opinion from prof ralph afterwards.
I have also called Prof Ralphs private service on 02074863805 to find out timescales and prices etc but i had to leave a message so hopefully they will respond quickly, il keep this post updated with any info i hope this info helps you @patience39 if you want a second opinion from Dr Rees.
I have read bad feedback for both of these doctors on this forum so i will be interested to meet them and make a decision.
i have also looked into Dr Eid in new york who on his site recommends implants over incision and graft, his site is urologicalcare.com and he explains under the peyronies disease section under surgical treatment/tunical lengthening .
I called them and was quoted 33000 dollars and was told i would need to be there for around a week, so i would need to work out accommodation and travel expenses on top.
Decisions decisions and huge costings to go along with them but can we put a price on our sexual health and mental wellbeing.
once again thanks for your contributions in my problem and i hope my investigations may also help in some way and make it easy for others to contact these doctors too.
il update finances on Prof Ralph once they respond to my mail.
Kind Regards
Rich
49 years old,70 degree bend diagnosed jan 2021.erectile dysfunction but helped with trt/cialis.