Monday, 18 March 2013

Men are routinely denied penile implants on the NHS

There is a peyronie's disease themed article in today's Daily Mail, a UK newspaper. Or rather it's in their online edition. Since it's so rare for men's health issues, especially peyronie's, to be covered by the mainstream media, I was both surprised to see it and impressed with the article itself. It tells the story of a 47 year old man named David who suffered from both peyronie's disease and erectile dysfunction and whose sex life was consigned to the past as a result of Viagra no longer working for him.

After a third referral (once again doctors proving that this condition is often beyond them) David received a diagnoses, only to be told that the potential long term solution to his woes, a penile implant costing a few thousands pounds, would not be paid for by the NHS. While the general public tend to appreciate that the NHS doesn't pay for cosmetic procedures, as this man points out, this is no such thing and is in fact the denial of treatment for a very real and troubling medical condition.  Eventually, out of desperation, the David took out a bank loan to pay for the implant.

The NHS does perform penile implants but only in the hundreds each year. As we hear all too often with the NHS there is a potluck or 'postcode lottery' aspect to getting treatment here, and that definitely comes across in this situation too. As is highlighted in the piece, 16,000 men have a radical prostatectomy each year, half of whom are then left with impotence issues. And this is before we even begin to think about all others suffering from erectile dysfunction problems via various mechanisms.

There really doesn't seem to be a plan when it comes to dealing with men's sexual health here in the UK, and often this is mirrored abroad too. Taking the prostatectomy issue alone, there are ways in which potential peyronie's disease scarring and impotence can be reduced off the bat ( see ' vacuum erection devices and  radical prostatectomies rehabilitation '). The medical professional needs to be far more pro active and up to speed to help patients get on top of  their situation before it even becomes a problem. Beyond that, surely there should be a structure of place to support men, both physically and psychologically, instead of leaving them in the cold at such a distressing and embarrassing time.

Says Dr Gordon Muir, a urologist at King’s College Hospital, London:
‘It seems perverse that women having breast cancer treatment can — rightly — have complex reconstructions on the NHS when a fundamental part of a male cancer patient’s identity can be ignored.'

You can read the full article here.

Tuesday, 12 March 2013

Surgery To Fix Curvature Of The Penis

I'm now a 27 year old male, two years ago I decided to get surgery to fix a curvature of my erection. I started to realise I had a problem in high school but didn't understand why and I was too embarrassed to talk to anyone about it. My erection had a severe downward curve. I never engaged in relationships with females because I knew in the end I had a problem that prevented me from having sex and it would be too humiliating to have that moment with her. Several more years pass, I'm now aware that this is not just a growing phase and that I have a problem that has to be looked at by a doctor. This was the most difficult thing I've had to face, I was so nervous about the whole situation. The thoughts of the doctor giving me bad news terrified me, but I was at my breaking point where I couldn't live with my condition any longer.

The first urologist I saw was unsure of my condition and referred me to a specialist. This urologist (Dr. Levine) knew what was wrong right away and spoke to me with confidence that he could fix it with a surgical procedure. He give me all the details about the surgery and its success rate, which is very high and I was convinced this is what I should do. I scheduled my surgery with him for next week. At this point I was still scared of something going wrong and a lot of bad thoughts go through a mind in this situation. I would advise not going through this alone. Having someone really helped me mentally handle my thoughts.

Day of the surgery I felt like my life was on the line. I meet with Dr. Levine while I'm laying on my bed awaiting to be taken in for surgery. Then the anesthesiologist comes in to put me under and that's the last thing I remember until I woke up post surgery in my bed. It's painful and now my penis is in a somewhat tight wrap. You stay there until they can confirm you can urinate. I got out a little bit but with the wrap on you have to squeeze it out so its not easy to get a good flow. That's the first sign that the surgery went well.

Now I'm home a few hours after the surgery and I just took my pain medication and watched movies. While on all the pain medication most of the time I was sleeping. There is still pain but it's manageable on the medication. A few days pass and finally I'm able to take off my bandage. It was not a pretty sight but it felt so good to get it off and urinate without restriction and to take a shower. Now with the bandage off I began to get some erections which caused pain but it was reassuring that my surgery was successful. There are some massaging techniques you do to make sure you don't form scar tissue, the shaft will be swollen and sensitive and takes some time to look normal again. I waited longer than I had to before I could masturbate again because I was worried but that was the last conformation I needed that everything was good and all the physical and mental problems were now behind me.

Two years later I've been a lot more confident, I don't have those thoughts in the back of my head of being an inadequate male anymore. It's definitely something that I should have addressed earlier because it can be fixed. My outlook of life is a lot brighter now. I have a new drive and I'm a lot happier with who I am.

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The above account is a message I received from a 20 something with congenital curvature. I saw a post relating to his penile surgery, carried out by Dr Levine, on a social networking site, and he was kind enough to provide a write up here. Hopefully this can act as a motivator for men considering surgery, whether for congenital curvature or, where suitable, peyronie's disease.

Monday, 11 March 2013

Email: Vacuum Erection Device Success 2

(This is a follow-up from the previous VED post.)

Hi Peyronies-Disease.co.uk,

I hope this is some help to other sufferers. As you know my consultant gave me Potaba about 18 months ago, but also wanted to operate. I didn't want this, so just carried on taking potaba. This seemed to stabilise the bending and also increase blood flow to the penis, but I wasn't gaining any ground, so I went back to my G.P. ,who sent me back to see my consultant. He suggested a V.E.D. This has changed my life, my penis size has increased, and also the bend has reduced significantly, so my daily routine is as follows: wake up, shower and do manual penis exercises stretching and bending, then dry off and use lots of water based moisturiser, have breakfast take my potaba and vitamin E, go to work continue during the day taking my potaba (four times a day), when I come in from work I use the V.E.D. for twenty minutes to half an hour, always use plenty of water based gel, and I remove all my pubic hair, as this gives a better seal. I pump my penis up and keep it fully erect for three minutes and then release. I repeat this over the twenty minute half hour period, then shower and more moisturiser, I do this seven days a week. You are more than welcome to print this,but please do not use my name,speak to you soon .

(New info from further email) I would say the bend has been reduced by at least 50%, also I find the Soma system very easy to uset. There are three cylinders A(small), B(medium), C(large). This refers to penis size, it took me a week by trial and error to find the best one for me. I started off on B and soon moved up to C, such was the increase in girth and the length wasn't important as the cylinders are about 12" long (300mm). There are different tension rings that are easy to use, just slide them on the cylinder, and once the penis is erect slide the ring on to the base of the penis.bI sometimes use these and you can stay erect for up to half an hour.
 Regards M

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(More on vacuum erectile devices and the VED protocol. The protocol this man used was a three cylinder system, as is the spivey system listed on the VED protocol page. An example of a one cylinder VED protocol can be viewed in this study in which a Osbon ErecAid unit was used.)

Saturday, 9 March 2013

Email: Vacuum Erection Device Success


Hi Peyronie-disease.co.uk,

I know it has been a long time since I have been in touch, but I have some positive news at last. I have continued to use Potaba,but my consultant has supplied me with a SOMA Correct V.E.D.device, the results have been amazing. If you are would like me to give you any information on these results,please just drop me a reply. I hope you are well yourself.

Regards,

M

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Hi M,

I'm so happy to hear that you've had positive results. VED and traction are sometimes used in conjunction with oral options (like potabo, pentox etc). The results of course vary though. From this email it sounds to me like you've exceeded what could typically be hoped for. I'd love to hear more so feel free to give me more details.There's a lack of positive accounts of peyronie's disease treatment really, so this kind of thing can give hope to others!

Regards,

Peyronies-disease.co.uk





(Note: Here's hoping that I have more to report on this in a future blog update. Often when PD sufferers have a positive outcome they effectively disappear and there is nothing to report back on. That's a shame, so I'm really pleased in this case that someone has taken the time to reach out about their positive experience. If you have a positive account to tell, contact the site about it.)