Topic: Update from UK (Read 1959 times)

UI89 · « **on:** March 15, 2021, 10:04:27 AM »

Hi,

Just providing an update on my condition and some of the advice from the NHS - maybe this will be useful to other Brits out there as there seems to be a big difference between UK and US treatments... for example....

Today I saw my Uro in person. (Original diagnosis was over phone/photos). He examined and me and confirmed the inevitable.

I had a urine test and he looked at a blood test I had in 2018 and there were no strange sugar levels in either - we discussed the diabetes link. There is also no history of Diabetes in my family.

Pentox is not prescribed on the NHS.
Neither is low dose Cialis for daily use - instead I got a generic Viagra prescription for 4 pills (I believe).

He seemed knowledgeable - I discussed every point on the Survival guide - and he had an answer for all of them.... I think it just comes down to the fact that the NHS don't want to prescribe something that has not been hugely tested??

To be honest, this was what I had expected.

I was given a leaflet which suggested both VED and Traction in the initial stages - but again, no prescription for these unfortunately.

I am on week 3 of VED (SomaCorect - 3 Cylinder etc...) and I have noticed some positive changes so far.
My foreskin, which was previously very tight, can now be retracted when 'erect', this is a bonus.
Ironically my flaccid state is bigger, girthier etc... but my erect state is still 60-70% of what it was (in terms of rigidity and angle)... with hourglassing and a curve at the glands to the left.
I've got photos and will keep a log of course.

I am also doing daily manual traction, sometimes twice a day, with rice sock.

My main focus right now is removing the hourglassing and hopefully ending up with a bit more of a 'solid' erection.
Length would be nice, but I'm trying to stay realistic about that returning!

If anyone would like a copy of the NHS leaflet, I can scan it in and upload here....

Somehow I feel there is more to this disease (in my personal case) than my doctors know so far... blood/urine tests have been inconclusive but I don't feel this is just down to 'trauma'.
I'm trying my best to reduce sugar.

Any thoughts on NHS experiences or UK specialists - I'm open to hearing!
Thanks

markdubby · « **Reply #1 on:** March 15, 2021, 12:53:17 PM »

hi i'm in the uk as well and you can find generic brand tadalafil online! its been helping quite a lot, giving me NTE s and erections in the morning. i use traction as well and am starting to see some slight reductions in curvature!

UI89 · « **Reply #2 on:** March 15, 2021, 01:13:49 PM »

Thanks MarkDubby,
Do you mind sharing a link?
Also are you taking them every day or just when you need to?
Cheers!

markdubby · « **Reply #3 on:** March 15, 2021, 01:54:16 PM »

https://www.medexpress.co.uk/

i'm taking 2.5 mg daily (split a 5 mg pill in half). i recently hurt my knee, plan to stop taking them when i can get back to training (running etc) which should get my circulation going strong again

sky43diver · « **Reply #4 on:** March 15, 2021, 02:22:02 PM »

My doctor writes a private prescription for 2 months of Tadalafil and I only pay £16. Worth asking your GP. My experience with my NHS urologist was you’ve got Peyronies and there is nothing you can do about it, which is extremely naive. If he had told me at the time to start VED and traction, I am positive that my bend would not have been so bad.
Fortunately I was able to go private and see an expert in peyronies.

UI89 · « **Reply #5 on:** March 15, 2021, 08:29:35 PM »

Thanks for the replies!

MarkDubby- how have you found taking 2.5mg every day? and do you mind me asking how much you would run normally? I'm doing somewhere between 10-20km a week, or trying to anyway!

Sky43diver - who did you end up seeing privately if you don't mind me asking?

Did either of you have an ultrasound (on NHS or otherwise...) is there any point in it? that is my next appointment...

Thanks again,

markdubby · « **Reply #6 on:** March 16, 2021, 04:58:09 AM »

it's fine, i usually take it at night. if im having a few drinks i might skip a dose due to low blood pressure. if i'm working from home all week i might up the dose to 5 mg. i wake up with strong erections and these are really good as they help blood flow to the penis and remodelling the scar tissues in your sleep. i dont have any erectile disfunction yet.

you should look into getting a penimaster pro however, i think its the main treatment that makes a change

UI89 · « **Reply #7 on:** March 16, 2021, 07:46:19 AM »

Cheers! I guess with lockdown, now is a good time for traction over many hours....

sky43diver · « **Reply #8 on:** March 16, 2021, 08:21:22 AM »

I saw Professor David Ralph in Harley Street London. Was fortunate to be covered by insurance.

Eric_C · « **Reply #9 on:** March 23, 2021, 08:39:56 AM »

Hi Chaps,

Another UK guy here. I've just booked an appointment with Dr Christopher Anderson, apparently he was on some UK TV medical show (embarrassing bodies?) - never watched it myself, but my GP recommended him to me, he's local.

I've just started suffering with increased indentations on either side of my shaft where before they were minimal. I have had periods of low sex drive recently, so no sex or masturbation etc due to a relationship ending abruptly and sending me on a bit of a downwards emotional roller-coaster for a couple of months. In my opinion, the increased time in a flaccid state may have allowed this worsening to occur. My sleep hasn't been that great and I've not been taking tadalafil regularly so there could be an Erectile Dysfunction connection here too.

The indentations are the worse they've ever looked hence why I got on the case of a doctors appointment tout suite.

UI89 - I tried everywhere to get Pentox but no-one would prescribe it to me in the UK, so I eventually gave up. There was also a type of gel but it's only available in America, and they outright refused to send me any. I have heard of a Verapamil (sp?) gel - I think I will start to make inquiries about getting some of that. I had an ultrasound whilst flaccid in 2019 but it didn't show jack. everything appeared normal but I without a shadow of a doubt had Peyronie's.

Hawk · « **Reply #10 on:** March 23, 2021, 11:47:40 AM »

Quote from: Eric_C on March 23, 2021, 08:39:56 AM

There was also a type of gel, but it's only available in America, and they outright refused to send me any. I have heard of a Verapamil (sp?) gel - I think I will start to make inquiries about getting some of that.

Topical Verapamil has been long established to be worthless and a gross waste of money. It was a hot topic over a decade ago. It was often administered through iontophoresis. Studies showed the same slight improvement with iontophoresis with or without the Verapamil. Patients were given topical Verapamil for about 10 days before surgery. Analysis of penile tissue showed NO penetration of the Verapamil into the tissue.

Eric_C · « **Reply #11 on:** March 23, 2021, 01:36:58 PM »

Quote from: Hawk on March 23, 2021, 11:47:40 AM

Topical Verapamil has been long established to be worthless and a grange waste of money. It was a hot topic over a decade ago. It was often administered through iontophoresis. studies showed the same slight improvement with iontophoresis with or without the Verapamil. Patients prior to surgery were given topical Verapamil for about 10 days prior to surgery, Analysis of penile tissue showed NO penetration of the Verapamil into the tissue.

Ah, I see. Thanks for that. That's a shame. It was a good while ago that I researched the more recent American gel - I can't remember what its name was, but there will be a fair bit about it on this site if anyone is interested.

UI89 · « **Reply #12 on:** March 23, 2021, 07:36:06 PM »

Hey Eric_C

Yup no chance of Pentox in the UK I feel... unless someone has a private hook-up.

I got Tadalafil easily from the Link Mark posted above.

Eric_C · « **Reply #13 on:** March 24, 2021, 09:08:14 AM »

Hi UI89,

Yes it's frustrating isn't it. Ironic, since the Depuyter's UK board do prescribe/endorse it i think (Depuyter's is a related condition). Very frustrating. I would have liked to have at least given it a go. I do know of people in the UK who managed to obtain a prescription for it. They felt that it didn't really help them and they became immuno-suppressed - which certainly would not be advantageous in today's climate with the viral pandemic.

markdubby · « **Reply #14 on:** March 24, 2021, 09:34:13 AM »

the penimaster pro is helping me more than anything at the moment i think. i would reccomend it. i only got a new phone last week so dont have a proper report on curvature improvement yet, but i definitely gained girth, erection quality and i think recovered some of the length lost.

UI89 · « **Reply #15 on:** March 24, 2021, 09:38:36 AM »

Hey Mark,

PMP is next on my shopping list actually... waiting for pay day.
How do you find wearing it under your clothes? hoping to make use of all this time working from home to get the hours in.

Cheers

markdubby · « **Reply #16 on:** March 24, 2021, 10:52:31 AM »

you get used to it, luckily living alone and working from home i am just wearing it naked half the time. i never leave the house with it on.

theres a bit of a learning curve to using it and putting it on properly but i almost dont notice it anymore!

UI89 · « **Reply #17 on:** March 24, 2021, 03:21:49 PM »

Fair play, I think my housemate would be alarmed if he saw me in that haha.
Hoping it will be easy to wear under baggy clothes.

Eric_C · « **Reply #18 on:** March 26, 2021, 09:03:36 AM »

I would definitely like to try traction at some point, but my tissues don't feel robust enough for it right now. They didn't respond to VED well, and i doubt they would respond to traction too well at the moment either.

Bobinlondon · « **Reply #19 on:** March 26, 2021, 11:54:17 AM »

Hi Uk People,

Bob here. I have been on the forum for quite a while and tried most things. Unfortunately without much success. Am now thinking about a Nesbit or an implant once Coronavirus makes operations possible again. Currently attending UCH under Dr A N Christopher.

Info. The cheapest viagra and cialis I found were at https://www.menschem.co.uk/ You used to be able to get extra discount with codes GIVEME10 and GIVEME15. I don't know if they still work but worth trying. (not sure about capitalisation)

I have a source for Pentox that you can get in the UK so if interested send me a direct message.

I might sell my Restorex and VED as they have not worked for me but not sure yet.

Lets see if we can help each other over here.

Best wishes, Bob

UI89 · « **Reply #20 on:** March 29, 2021, 07:02:40 AM »

Hey Bob,

Sorry to hear you are not having much success.
Thanks for the link - good to know!

Cheers

Eric_C · « **Reply #21 on:** April 07, 2021, 07:09:21 AM »

Hi Bob,

Sorry to hear you're not having much luck, me either really at this stage. I was mild, but now it's getting worse.

I'm looking into traction, if I decide I like the Restorex, I'll drop you a message.

Cheers.

Mr man · « **Reply #22 on:** April 09, 2021, 05:21:25 AM »

Some of you guys above have mentioned how difficult it is to obtain Pentoxyfilline. I posted a request for a supplier in this site. A kindly member replied.

Have ordered, and have to say the product and service is excellent. Here is the link.

https://goldpharma.cn/

omgpleaseno · « **Reply #23 on:** April 09, 2021, 09:15:57 AM »

To all those who have said that Pentox and Cailis aren’t available on an NHS prescription for Peyronies, I suggest that you change your GP. I had a conversation with my GP, following me seeing a Urologist (privately) and now have these two drugs on repeat prescription. I do have diabetes though, whether that is a criteria for prescribing?

UI89 · « **Reply #24 on:** June 17, 2021, 04:03:51 AM »

Next Update,
I had another appointment with my Urologist - 3 months on.
Unfortunately I have not been able to get an ultrasound on the NHS yet - presumably due to Covid etc...

In the past 3 months, unfortunately things have got worse.
I now have a ~30 degree curve upwards - with a dent just below the glans on the left, which is not filling out at all.
- Curve at glans pointing left has stayed fairly constant - ~30 degrees left.

I have upped my Cialis intake to 5mg per day, I feel this has helped girth a bit, but on length - I am still down 1" or so.

Urologist basically asked what I wanted to do and said we could talk through surgery options. As I still feel I am relatively early on into this disease, I am planning on re-assessing in 6 months and seeing what state I am in then (with appointment with uro then).

I have been using PMP belt every day - work in education - so can barely get away with this (Long shirts etc...) - but not sure the belt is really helping me that much, the device seems much more extreme in terms of pressure.

I went for my first run in months yesterday and when I got back I had an ache/pulsation(?) in my penis which lasted a few hours - occasional shooting 'pain' but nothing awful.
Has anyone had this?? Good or Bad?

Thanks!

JamieKer56 · « **Reply #25 on:** July 02, 2021, 02:42:04 PM »

Hi All,

I've just read this thread.

I'm also in the UK and have experienced some of the same issues and experiences.

I wander if we could start off a thread for Peyronies People in the UK (if that's allowed).

It might be helpful for everyone.

Just a thought

Jamie

RichardWilson99 · « **Reply #26 on:** July 03, 2021, 03:14:36 AM »

The point of the forum is for free flowing information across all barriers. I don't see any reason for just UK people to discuss all peyronies related things. I could see posting about doctors/insurance related things pertaining specifically to the UK. However, let's not fragment this forum because of geography

sky43diver · « **Reply #27 on:** July 04, 2021, 05:27:48 AM »

Totally agree, I have learnt most from across the pond. Many thanks US friends.

Nolte94 · « **Reply #28 on:** July 04, 2021, 10:38:52 AM »

Quote from: JamieKer56 on July 02, 2021, 02:42:04 PM

Hi All,

I've just read this thread.

I'm also in the UK and have experienced some of the same issues and experiences.

I wander if we could start off a thread for Peyronies People in the UK (if that's allowed).

It might be helpful for everyone.

Just a thought

Jamie

This idea is as selfish as the Brexit.

GaussRifle · « **Reply #29 on:** July 04, 2021, 03:05:11 PM »

Hahahahah.... shots fired.

cdub · « **Reply #30 on:** July 04, 2021, 08:42:09 PM »

Your politics aren't needed on the forum Nolte94.

Pfract · « **Reply #31 on:** July 04, 2021, 10:20:49 PM »

Quote

The point of the forum is for free flowing information across all barriers. I don't see any reason for just UK people to discuss all peyronies related things. I could see posting about doctors/insurance related things pertaining specifically to the UK. However, let's not fragment this forum because of geography

I second Richard's opinion! Keep it funny, but keep it civil guys.

UI89 · « **Reply #32 on:** July 05, 2021, 10:33:09 AM »

Just getting back to Peyronies - went on another run last night and had the same tingling/ache - anybody else had this before ?
I’m wondering if it is to do with 5mg Cialis intake?
Running about 10km/6miles

Cheers

Nolte94 · « **Reply #33 on:** July 05, 2021, 12:03:19 PM »

Quote from: UI89 on July 05, 2021, 10:33:09 AM

Just getting back to Peyronies - went on another run last night and had the same tingling/ache - anybody else had this before ?
I’m wondering if it is to do with 5mg Cialis intake?
Running about 10km/6miles

Cheers

I've experienced this feeling after sport, too (for example riding with my mountainbike, total body workouts and running). But my curvature has improved since I do PTT, taking Tadalafil and doing more sport and pain has gone away.

Eric_C · « **Reply #34 on:** December 05, 2021, 01:23:24 PM »

Quote from: RichardWilson99 on July 03, 2021, 03:14:36 AM

The point of the forum is for free flowing information across all barriers. I don't see any reason for just UK people to discuss all peyronies related things. I could see posting about doctors/insurance related things pertaining specifically to the UK. However, let's not fragment this forum because of geography

As grateful as we all are for the existence of this forum, it is unfortunately a reality that a lot of things are different for you over there. We don't have the same medical system, often drugs, services and terms use different names. There are many differences.

Geographic Sub-forums might not be a bad idea. Might help encourage peer support too. I know I feel damn alone with this condition and suffer in silence.

jj21 · « **Reply #35 on:** December 05, 2021, 07:38:30 PM »

I use to get pain from running - it was my penis moving in awkward positions (up n down) which would flare up the pain from peyronies.

Cialis daily was great for my Erectile Dysfunction and NTE - no idea why its not prescribed in the UK - there is also a generic version available which makes it much cheaper. Before generic I use to buy it off the net - I found sometimes you will get a batch that is a bit under-dosed. The study on Cialis in regards to peyronies I believe was 5mg per day which suggested it could reverse peyronies (don't quote me on that I read it a while ago).

I also had an undiagosed hernia which use to cause pain in my scrotum and strangely enough it was very close to where my dent was so after running n doing weights I would feel that pain too.

Hope that helps anyone.

FlatteningTheCurve · « **Reply #36 on:** December 06, 2021, 04:14:40 AM »

Hi all,

I've been living in the UK since early 2021.

About Cialis - I have seen people at London Andrology and one of their Peyronies Disease specialists helped me get referred to him through the NHS. They prescribed Cialis to me straight away, think I pay £10 for roughly six weeks supply. No idea why it is not prescribed throughout the NHS.

That said, before seeing London Andology outside the NHS, I was referred to a specialist through the NHS by my GP. That guy basically said the same things as was initially shared on this thread 'you've got Peyronies Disease, nothing we can do about it'. No prescriptions, no surgery, nothing. So maybe it varies between urologists?

jj21 · « **Reply #37 on:** December 06, 2021, 04:34:39 AM »

Remember the general consensus here has been that a lot of Urologists do not want to deal with peyronies disease. They rush you out of the office.

My first urologist just told me there nothing you can do about it and quickly rushed me out of the office.

Second one specialised in transgender surgery - he prescribed me Pentox and cialis daily and did the ultrasound and recommended the VED.

Third urologist specialised in peyronies and started ESWT and was actually interested in healing the disease.

** my mistake in my comment above I meant to say the Cialis study showed 6 months usage may reverse FIBROSIS not PEYRONIEs - MY ERROR.

Eric_C · « **Reply #38 on:** December 08, 2021, 08:21:01 PM »

Guys, there's a bit of confusion here, but thank you for sharing your experiences. It's frustrating isn't it how people don't want to deal with this condition they just want you out.

It's Pentox that's hard to get in the UK. I was refused it by an uneducated uro who clearly had not kept abreast of developments in the Peyronies Disease world. When I finally managed to get a Pentox script I feared taking it due to covid and people reporting more colds on Pentox.

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