Introduction from UK

[andthensome]

Hello,

I'm new to the forum and am introducing myself. I'm 46, live in the UK. About five or six months ago I started noticing a stinging sensation while urinating. The sensation moved to being present even while not urinating. I wondered if I had a UTI, but didn't do anything about it due to appointments with GPs being so difficult to get during lockdowns and all the other business of life with children at home etc.

Fast forward five months and my wife and I were "getting it on" for the first time in a while, when I noticed a really strange sensation in my penis. It felt tight. When I looked at it I was shocked to see a curve just below the head upward toward my body. It also looked shorter than normal. I got really concerned, though my wife wasn't at the time. We didn't have sex because I suddenly started worrying about an infection again and just didn't know what was going on, plus it killed the mood.

Since then I've been trying to get seen on our NHS (national health service) but the best I've managed so far is a two week wait with a urine sample and phone consultation. I had that phone call, the urine sample tested negative for infection, and the doctor sent me a link for info on Peyronie's, saying that is what he thinks it could be. Unfortunately our system over here is just not really fit for purpose these days and I now have to wait three more weeks to have the pleasure of going in to the GPs practice to get seen in person, so that he is able to further recommend me onward to a urologist. The urologist will not see me without an in person confirmation. So after that three week wait, he will then refer me onward and I expect another month wait. Meanwhile I'm dying here.

I am pretty positive that I have Peyronie's. I have two hard like tendon like things about 1cm long on each side of my shaft just below the tip. These don't extend and cause the curvature while erect. I have a moderate aching to stinging sensation constantly. I just want to know the diagnosis and most of all, after reading the guides on this site, I want to start proper treatment asap. I know I will get fobbed off by the NHS - as I say, the system is just completely overloaded and cannot offer reasonable service these days.

I am based in the rural areas outside of London and commute for work to the city now. If anyone from the UK happens to be reading this, would you be able to recommend a private urologist I can pay to see immediately who hopefully knows a lot about and will help deal with Peyronie's?

So, as I say, I don't have an official diagnosis yet, but I'm pretty sure it is the disease.

Going through all the emotions that you all have probably been through. Depressed at the moment. Disbelief. Dread at how it will progress. Dread that it is an inevitable end.

[Jimmy123]

Hello
Not a recommendation because I have not met him but David Ralf in London seems to be well know for this condition. I think elsewhere on the forum there is some discussion about specialists. I wish you all the very best.

[andthensome]

Thank you Jimmy123

[Muttley]

Yes, as Jimmy said  prof. Ralph at UCL  is highly recommended. I have asked my gp to refer me to him (i have had no contact with him yet).  

[MarkDS]

I have seen Prof Ralph privately and now I am under him/his team on the NHS.

Unfortunately the main course of action on the MHS is to waiting and see what happens over the first 12- 18 months, and then see if an operation is necessary.

I did manage to get the Soma Correct vacuum pump on the nhs.

If you read my previous posts I ended up having a failed incision and grafting surgery.  Not by Proc Ralph.  If I had seen him to begin with I'm sure the outcome would have been different.

Good luck  

[andthensome]

Thank you all. I'm looking into what things I can do (or not do) on my own steam while I wait for the GP appointment and subsequent urologist appointment.

Not sure if I should be starting VED now asap, and the other possible oral supplements. I'll be reading through as much of the info on the forums here as time allows.

[philtered]

  Make an appointment with prof ralph, he'll tell you the best course of action for your case.

[Muttley]

Which VED is that?

[andthensome]

Hi. I thought I'd post an update here.

I managed to see Dr. Ralph privately. The NHS did not seem too interested in getting me seen by a specialist so I self funded the appointment and also need to self fund any medication and other treatments. Dr. Ralph examined me, said it was clearly peyronies (large plaque near the end of the shaft). Like others who saw him, he did a quick check on my hands. Measured my bend from photos and said it was 30 degrees. He offered me some information about VED and traction devices. He said the best traction device I could use was one not available in the UK, only the US, and asked if I knew anyone who I trusted who would be visiting the US or lived there and could ship it to me. The answer to that is no unfortunately. So now I'm looking at how to source one from the UK. He also prescribed me tadalafil and tamoxifen for the next two months. He also recommended "home modelling" which is basically stretching the penis yourself without a traction device. He did say it would probably be worth getting a traction device though.

So that's my latest. I'm taking the medication he prescribed and doing home modelling. My next steps are to decide if I want to use a traction device and if so, how to obtain the one from the US (which has the ability to not only stretch but bend the penis) or use the local UK device which cannot bend the penis. He didn't seem too fussed on the vacuum device, but obviously like many people here, I'd want to try everything I could to prevent the disease from progressing further. I could also try to start taking l-arginine and CO Q10. I know these are recommended but Dr. Ralph didn't seem too fussed whether I took them or not.

One thing that confused me is he seemed to suggest that the acute phase only lasted a few months, which is why he prescribed the medication for two months and said there would be little point after that.

That doesn't seem to quite match what I've read here where the phase can last a year or two. Maybe I misunderstood what he was saying.

[Ethan]

It has been almost a year since the last post here. Hope you are now on the road to recovery.

... I searched for 'home modelling' on the forum and arrived here.

... He said the best traction device I could use was one not available in the UK, only the US...

I saw Prof Ralph very recently (early 2023) and I explained my peyronies. After examination he told me to buy the 'Restore X' which is now available from iMediCare in the UK. I asked him what he thought of the PeniMaster but just directed me to get the Restore X instead.

My original peyronies bend (near the glans) had almost completed straightened out by the time of my appointment, but a new peyronies bend (near the base of the shaft) had appeared just about 4 months before I saw him.

... He also recommended "home modelling" which is basically stretching the penis yourself without a traction device.

He also told me to do home modelling and v stupidly I forget to ask him what this involved.

Q : Is there a guide to how to do this?... Is it just stretching?

 

[thegreycat]

Hey andthensome - I feel your pain when it comes to the NHS referrals.

I first went to my GP nearly a year ago, told me not to worry and that "in ten years" it "might turn into peyronies disease". Went back a few months later once it was clearly progressing and had to battle for a Uro referral, so much so that the GP even asked me "what do you want me to do?"

That referral never came through. I went to another GP AGAIN in October who referred me to a different Uro and that only just came through. They guy literally laughed at me in the consultation which has done a complete number on my already ruined mental health over this.

I'm glad you've been able to afford to self-fund a private consult, atleast you're getting an expert!

As far as devices go, I'm using a SomaCorrect VED every morning and have recently started with a PeniMaster Pro traction device for two hours an evening. It's not as strong as a RestoreX, but doing something is better than doing nothing IMO and I really hope you manage to get on top of this thing.

All the best.

[andthensome]

It has been almost a year since the last post here. Hope you are now on the road to recovery.

... I searched for 'home modelling' on the forum and arrived here.

I saw Prof Ralph very recently (early 2023) and I explained my peyronies. After examination he told me to buy the 'Restore X' which is now available from iMediCare in the UK. I asked him what he thought of the PeniMaster but just directed me to get the Restore X instead.

My original peyronies bend (near the glans) had almost completed straightened out by the time of my appointment, but a new peyronies bend (near the base of the shaft) had appeared just about 4 months before I saw him.

He also told me to do home modelling and v stupidly I forget to ask him what this involved.

Q : Is there a guide to how to do this?... Is it just stretching?

Hi Ethan,

Sorry I missed this post until now. Home modelling, at least as described to me, is to simulate what the Restore X would do, but obviously over a short time.

So for me, I would stretch the penis out length ways, as in at a 90 degree angle from my body and pull as far as it felt reasonable, holding this for 30 seconds. Then I'd put my left hand index finger under the shaft near near the point of the plaque and bend against the curve caused by the plaque. For me, this was bending it downwards. So you're pulling outward like before, then wrapping it over your finger and pulling downward, creating a right angle in the shaft of the pension, against the plaque curve. Again, 30 seconds. I'm not sure of the exact timings required but Dr. Ralph suggested I do this for about that length of time every time I went to the bathroom, which means quite a few times each day. From memory, he also suggested bending and stretching it in other directions, which I did. I just basically gave it a good old stretch against my free hand in as many ways as I had time for each time I went to the toilet, or shower, or whatever.

I may as well post an update here while replying to this.

I still take tadalafil for two months at a time, with a month break between. No particular reason for the month break, I just wondered if it was safer to do so. I get a repeat prescription. I only took the initial two months dose of tamoxifen and no more. I have not don't the home modelling for a few months now, which is lax of me.

But on the good news front, I feel very fortunate in that my condition seems to have stabilised after the initial plaque. I don't have new plaques and my existing one, while not any better, hasn't got much worse. Possibly a tiny bit, but seems stable for the last six months.

So for the moment, I consider that a good win, but I'm also conscious it may not be the end of my story. Only time will tell.

[Pfract]

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