Self Diagnosed in the UK

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Mastertrix

Hi All,

Never having been one to shy away from stripping down and strutting along the nudist beach, exuding masculine dominance over envious onlookers, I now find myself covering up, preferring to scour away from the gym and shower in the privacy and security of my own home.

October 2016 was when I first noticed a small lump had appeared in the upper regions of my flaccid penis, apparently unnoticeable when erect. Thinking I would simply monitor it for a while, it seemed to be more prevalent at times than others however, after a few months I thought a second opinion may be in order.

During a routine check-up at the GP, I plucked up the courage and enquired as to its identification and was told not to worry as many men developed such lumps and it would probably disappear with time. A few weeks later, while visiting a urologist for an unrelated issue, I again requested a diagnosis. Once again, I was informed not to worry, since there was no pain, I should just ignore it.

After approximately 6 months, my little lump had developed into a rather larger blimp, bringing with it a loss in girth and an upward turn of about 30 degrees. It left my erection to appear as if there were an invisible band constricting blood flow about two thirds along my penis, leaving the head to flop loosely from side to side, making penetration somewhat awkward. I turned to the internet and self-diagnosed the onset of Peyronies Disease. The information was not conclusive, sighting various options for treatment however, without holding much hope of cure or even management. I began to imagine that life after 50 may not necessarily involve intimacy!

About a month ago, on waking to a 'glorious' morning, the mirror reflection revealed an upward turn of around 80 degrees, a much tighter constriction in girth and a loss of considerable length. Shock and horror struck!

Having hidden this from my partner thus far, it became necessary to explain the sudden lack of frequent frivolity in the bedroom. It was possibly the ensuing jeering and mocking laughter that drove me to surf the net for some answers. To my relief, I stumbled across this forum, realising I was not alone!

Having been subsequently engrossed in many stories and shared experiences, I fear I may need to make up some time and start treatment as a matter of urgency. Given I work a 60-hour week and my partner fills up all spare time in my diary, although I have recently freed up some time previously scheduled for romantic activity, I was hoping to elicit some expedient advice. In the effort to prevent an information overload of my confounded dyslexic brain, is anyone able to fast track some information regarding any of the following?

      •   Finding a route through the NHS to a reputable specialist urologist who would diagnose and prescribe initial oral treatments in the UK
      •   Experiences or advice in obtaining 'SOMAerect' products through the NHS
      •   Information regarding progress or experience with the Priapus Shot in the UK

Thanking you in advance for your help.

On a side note, I try to keep a positive attitude in life and try to always find light in crisis. So, if it is not too 'insensitive' to say,

Keep smiling, thanks for this forum and....keep it up guys!

Murphyslaw

Hi Masterix

If you view my introductory post you'll see my recent experience with an NHS urologist. This should help on all but the Priapus shot question.

Good luck


PeetyPeet

Quote from: Mastertrix on July 12, 2017, 04:20:17 AM

      •   Finding a route through the NHS to a reputable specialist urologist who would diagnose and prescribe initial oral treatments in the UK
      •   Experiences or advice in obtaining 'SOMAerect' products through the NHS
      •   Information regarding progress or experience with the Priapus Shot in the UK


In answer to your questions:

1. All penis problems are referred to your local urologist who most likely won't be too familiar with peyronies. It's normally a 2-4 month wait. To see a specialist you will need to tell your GP from the outset who you want to see (search the doctors list on the forum for reknowned specialists). If the specialist you want to see is outside of your trust's catchment area you will need permission from the other trust's clinical commissioning group (CCG). One way to get this is to get a letter from your local urologist supporting your application, which means having an appointment with them first. It could easily be 6-8 months before your first appt with a specialist. If you can afford private, you can see who you like without permission from a  CCG and your wait will be cut to a matter of weeks , but of course it's expensive at £300 for an initial appt. A specialist might prescribe low dose cialis but otherwise there are no oral medications licensed for peyronies in the UK. Even the best urologists in the country tend to have a 'wait and see' approach followed but surgery in cases they consider serious enough. Recent clinical guidelines encourage them to take this approach.

2. Your urologist will need to write to your GP requesting you be prescribed one. VEDs are free on the NHS if you have ED resulting from diabetes. I'm not sure about peyronies. This might mean another application to a CCG.

3. I don't know much about the priapus shot. I think it is generally considered cosmetic, but that doesn't mean it won't help. I don't believe it's available on the NHS.

Hope this helps and good luck.

Peety

Mastertrix

Peety,

Thanks very much for your advice.

I had not held much hope in getting far through the NHS, so this information is valuable and I will now rather pursue a private course.

Many thanks,
Mastertrix

Paolo

Mastertrix, sad, but true, private is probably best for quickness to see what options you have, good luck  :)
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

AnonStricture

Where are you based in the UK?

If you are based in London I would recommend a referral to UCLH.  They have all the best urologists in the UK in my opinion.

https://www.uclh.nhs.uk/OurServices/Consultants/Pages/MrDavidRalph.aspx  

projectpd

on point 2 I suggest buy a cheap one online. eg under £30 from ebay . as with the extenders with the strap & rods , the basic functionality is identical regardless of price/model, and the variations from there aren't really predictable by price. I would recommend ones with a separate pump connected by a tube , it's more convenient and can use in the bath as long as not submerging the pump, and the pump can be replaced if it breaks. the pump is the bit that is probably most likely to break eg the handle can break off, so go for not the very cheapest if its a trigger type pump .  I have bought a few including an expensive  medical type one ,Osbon, that comes with rings that can be rolled on to maintain the erection and remove the pump, but ones that are more convenient and actually work better for me were quite cheap. one is made from a non-rigid (but still very firm) material in a penis-shape that makes it look like a bit tacky/gimmicky (but it's not, it works well ) , followed by a particularly narrow perspex one (so it causes some contact/squashing against the sides) with a valve to allow detachment of the pump tube, neither is expensive.  A big ugly looking pump with a pressure gauge has proved the most reliable and adds some interest, but I find I can't really rely on the gauge for much, have to go by feel I think . let us know if you agree!
Age 57, Onset 2010, 2" shortening, shrinking and angulation of glans, weaker erections, 30 degree bend. Mild pain few months, but far from worst symptom. Tried many ideas, not just from here, but not consistently. Moderate improvement, maybe 40%