Wednesday, 20 November 2013

Email: Choice of Urologist

Hi,

I hope you don't mind me contacting you.

I've just made an appointment to see my GP in Nov' 2013. As I have severe dupuytren's contracture in both hands,and ledderhose disease (Plantar fibromatosis) on both feet consequently I'm certain this bend and tightening (noticed just 2 days ago) will be diagnosed as Peyronie's as they're all connected. I live in London so want to have my GP refer me by way of the NHS to either Mr David Ralph or Mr Suks Minhas. Do you have an opinion who might be best to see? Or another doctor altogether. I know I'm putting you on the spot but finding any UK information is proving difficult.

My initial concern is how best to stop it's advance or slow it.

I have looked on the Peyronies Society Forum where their names have been mentioned as was the link to your Blog.

Any thoughts would be greatly appreciated however I apologise in advance if this email is not appropriate.

Regards

------

Hi,

Here's hoping that your appointment goes well. Men with dupuytren's and ledderhose often suffer from peyronie's disease too, a fact it appears you're aware of.  At least you have immediately spotted this and decided to take action. It's likely that they will suggest a conservative approach at first, possibly pentoxifylline combined with a vacuum or traction device. Injection therapy in combination with traction is also an option. Conservative approaches are often taken an an attempt to avoid surgery later down the line. These are the tried and tested treatments in terms of attempting to limit the damage that peyronie's does.

You're right about the lack of information out there with regard to peyronie's disease. It's very unfortunate, considering how many men no doubt  lose sleep over this health concern. There really aren't many 'go to' people in the UK or anywhere for peyronie's.  Both of the urologists you mentioned are respected in the field. As is Tim Whittlestone I believe. David Ralph is a top class peyronie's disease surgeon, so if it came to that, you're in good hands there. As you can see from the Tim Whittlestone email the blog received, he appears to be very approachable and empathetic. Factors that of course cannot be underrated with a troubling condition such as this.

You may have already seen these. The videos are not peyronie's disease related, but do feature David Ralph and Suks Minhas. Maybe they will play into your decision making:
 
David Ralph: http://www.youtube.com/watch?feature=player_detailpage&v=uQ_lFVtkcMM#t=452  (7:38 in)

Suks Minhas: https://www.youtube.com/watch?feature=player_detailpage&v=ev-Sc13YCX4#t=1388s (23:14)


NHS waits can often be quite prolonged, weeks at best. If finances allow, it might be worth getting a consultation privately to speed things along.

I have my fingers crossed for you.

Regards,

Peyronies-Disease.co.uk

Friday, 11 October 2013

Email: "Wait and See"


Hi,

 I was diagnosed with Peyronies disease about a month ago.  I first noticed something going on with my penis sometime in February, not sure if this relates but I was on a month's worth of Ciprofloxacin in December 2012.   At first I noticed a strange indentation, this was followed months later by pain during sex, burning sensations when urinating, and later decreased ability to produce an erection.  I can get erections now only by taking viagra or cialis and have an hourglass shape at times when the penis is filling with blood and a slight (though this varies) curvature to the left.  I went for a consultation and was told to come back in January once things had 'run their course' and given no other advice.  I try to have sex at least once a week and have been taking vitamin e suppliments and doing Kegel exercises.  The whole process has been disheartening to say the least.  My GP has said that the penis is very elastic and that things may go back to normal on their own.  Any advice you could offer would be most appreciated. 

-------

 Reply:

It's not uncommon for men to experience symptoms months before they notice any difference in curvature or indentation. Generally with health issues we're used to a timeline that doesn't extend beyond the immediate so it can be a somewhat perplexing process when a health concern doesn't follow that trajectory. The "run its course" advice isn't the best to be honest. It mirrors much of the "wait and see" style opinion that men with peyronie's disease frequently receive. In reality while there may not be a miracle cure, 'there's no time like the present' isn't a bad ethos to adhere to. At a minimum I would say that you should be taking Trental and using either a VED (vacuum erection device) or traction device, both of which have studies to back them up. Once the condition is stable you can then decide whether to continue with this regimen, or if that doesn't suffice surgery is an option. It pays to be proactive though. Studies for trental (aka pentoxifylline), ved and traction are listed here. It may be worth taking these to your doctor.

Thanks,

Peyronies-disease.co.uk

Monday, 2 September 2013

Peyronie's Disease Podcast




The Slate website has launched a new health podcast called 'The Checkup'. This, the second episode, details male and female sexual problems and starting at 11:09 there is discussion of peyronie's disease. Surgery, Xiaflex and more are touched on. Worth a listen and it's good that peyronie's is getting some exposure on a popular online magazine.


Monday, 26 August 2013

Peyronie's Disease and Social Networking


Social media is increasingly playing a noticeable role in our lives. Whether we're tweeting one another on Twitter, liking a facebook post from a friend or posting a comment on a Youtube video, it's something that a staggering number of us are now part of. There is also a trend to make these platforms less anonymous. Facebook for example insist that you use your own name. Google also prescribe to that philosphy of 'openness' by insisting on real names on their Google+ platform and Youtube. While there's something to be said for that approach, it also impacts upon privacy, which in turn changes behaviour. That's certainly apparent when you research peyronie's disease on any of these websites.

Facebook has over a billion active users. One thousand million. As you can imagine there are pages set up for favourite pop stars (Lady Gaga 58 million 'likes' - read 'likes' as members or followers), animals (one cats page with 2 million likes) as well as serious health topics which are often subject of public appeals - like breast cancer (various pages with hundreds of thousands of likes, one with 3 million+). What of peyronie's disease though? Well I found one page with 11 likes, one with 72 and... well that's about it. It's staggering isn't it. The condition falls so neatly into cultural ideas of masculinity, embarrassment and goodness knows what else that almost no-one on the face of the planet wants to step forward and say that they have it.

I do understand that on the whole Facebook interests a younger crowd, but 1) some young people have peyronie's disease too, and 2) many millions of older males do use Facebook. I also appreciate that compared to other health concerns like breast cancer peyronie's disease isn't as widespread. That said many millions of men have it. It's not a 'rare' condition by any means. It's the same story on Google + and even on Twitter - where again there is a tendency for people to reveal their identity and thus not be open about certain topics. twitter is also a platform that's very restrictive in terms of word count, so the complexity of the condition may not be suited to the service.

One exception to the rule is Reddit. It's a social network / news site that is much less personal. Most members are anonymous and it's common for people to create throwaway accounts where they talk about a specific issue or share a concern without making it something personal to them. As such there are at least a few peyronie's disease related posts and accompanying discussions. I view this as a real positive as almost all of those involved in these conversations are becoming more informed with regard to the physical and mental aspects of this unfortunate condition. It increases awareness, and that's something that is really important. With peyronie's in the public eye there is potential for learning, understanding and more emphasis on treatment.

Tuesday, 20 August 2013

Fractured Penis - "Wait and See"


Here is a recent piece that featured in The Guardian newspaper and on their website in July. The author, a psychotherapist specialising in treating sexual disorders, takes time to cover the emotional aspect of the condition - telling the wife not to blame herself and to retain an intimate connection with her husband if possible.  Sound advice. The comments on the actual treatment side of things didn't strike me as being particularly informed or detailed though, telling him to follow the doctors orders "to correct the buildup of plaque and/or scar tissue in a penile artery that's causing erectile pain.". The treatment prescribed according to the concerned partner writing in is "a prescribed cream". I can only assume that this is topical verapamil cream, which doesn't have a great reputation in my view.

The 'Guardian Picks' choice of 'PhilClarke' in the comment section is quite interesting. There's certainly more substance to it in regard to the physical side of things than the article. However, the comment is rather critical of peyonie's disease discussion groups on account that he feels they cater for the more extreme cases and are wishful thinkers with regard treatments. He goes on to state that he's in "wait and see mode" and that peyronie's pain will typically diminish and disappear.

I tend to agree that for most men pain caused by peyronie's disease inflammation will go away. Where I disagree is that engaging in no treatment options is a sensible option when dealing with the condition. We know for instance that Pentoxifylline is useful in improving the outcome of peyronie's and as such there's really no reason not to pursue that option. Multiple physical treatment options  can also reduce curvature in many cases. If your house is on fire you can 'wait and see' if the fire goes out or causes serious damage, it's guesswork. Or you can do something about it. My advice would be the same with peyronie's.

Saturday, 3 August 2013

Urologist Question

Dear Peyronies-disease.co.uk,

Do you know of a tactful and compassionate UK based urologist? My previous urologist was very abrupt and non caring, and I don't want to made the same mistake twice.

Any help or advice would be much appreciated,

S


-------------------------------

Dear S,

This is a tough question as to a certain extent it's subjective. Some urologists seeing many peyronie's disease patients every week have 'seen it all before', so may come across as indifferent as a result of that. I think it's best that I share some info that's out there and let you make up your own mind:

Here is Doctor David Ralph (respected peyronie's disease doctor) in a consultation with a man with a small penis condition: My Penis and I [2005] - YouTube

Mr Suks Minhas (University College London) discussing penis length issues: My Penis And Everyone Else's[2007] - YouTube

I know those issues aren't peyronie's disease related, but it gives you a chance to actually observe both urologists in action to see how they come across. This might result in you feeling more comfortable with booking an appointment with them.

One urologist I have seen recommended a few times in terms of his dealing with the emotional side of things is Tim Whittlestone from Bristol Urology: Bristol Urology Associates - The Team Profiles . I've known people to describe his manner as excellent and state that he put them at ease. With that in mind, maybe he would be a good choice?

Thanks

Peyronies-disease.co.uk

Saturday, 11 May 2013

Penile Traction Therapy Review

Traction therapy has, over the past few years, gained acceptance as a valuable useful tool in the battle against peyronie's disease, sometimes reducing curvature to the point where surgery is no longer required and increasing penis size along the way.

A comprehensive review of traction therapy has been published in one of the latest editions of the Therapeutic Advances in Urology journal and it's available to read here. It's a very fair article in that it doesn't solely concentrate on the positives, but also touches on the limitations (for instance thoughts concerning how it may be of less use is calcification is present) of this treatment type. It's important bring together the latest information available and educate yourself when choosing a treatment path.  Vacuum erectile devices are also covered, adding to the completeness of this review. It's a good read and should get you up to speed on the device based aspects of conservative treatments.

If you'd like to read more about traction therapy go to this site page, and for more on VED go here. There is no quick fix for PD, but there are treatment that certainly can help physically and in doing so also reduce some of the mental burden that is more often than not present too in sufferers of this condition.

Thursday, 9 May 2013

Peyronie's Disease Studies

The main PD studies page is here. The below studies are also relevant but more often than not relate to aspects of penile health not specifically linked to peyronie's disease treatments:


Testosterone deficiency - Peyronie's disease link 

An interesting study was posted in June highlighting low levels in testosterone in those with peyronie's disease. As this is a pilot study it's hard to know if this is a matter of causation or correlation, or for that matter if the results can be replicated.

In addition to other approaches to dealing with peyronie's, it may well be worth getting your testosterone levels checked. If they are low, the doctor may well suggest testosterone injections. If you wish to raise your levels naturally, then I recommend the supplement Tongkat Ali.



Priapism



Not a new study, but an example of how the PAV cocktail (Pentoxifylline, L-Arginine and Viagra) helped in cases of priapism where the likely outcome was corporal fibrosis. Of course, it's unlikely to translate perfectly to peyronie's disease which is still not well understood, but it's a good starting point. View the study here.]

Decorin in the rat model

It's worth remembering that lots of drugs work well on the rat model of peyronie's disease and yet are often not as promising in human subjects. Still, it's good to know that work continues to find new effective treatments for men with peyronie's.

Peyronie's Disease Prevalence 

This new study touches on the difficulty there is in estimating how many men have peyronie's disease. I've heard various suggestions of how rare peyronie's is over the years, but it's not something that's easy to measure. Many men don't ever seek an official diagnosis due to fear or embarrassment. Add to that this study, which reveals that even those who do seek medical attention are often not initially diagnosed with PD. As such they frequently remain untreated at a time where they would best respond to treatment. The study goes some way to suggesting that peyronie's disease is, rather predictably very often underdiagnosed and undertreated.

Peyronie's Disease In Teenagers 

Peyronie's disease is often viewed to be a disease suffered solely by middle aged and elderly men. However, a significant number of young people likely also suffer from it. As we can see in this recent study high distress was experienced by a staggering 94% of patients between ages 15 and 19. There needs to be more appreciation in the medical community that young people can develop PD and that that peyronie's disease in young people brings about different challenges, both physically and mentally.

Testosterone deficiency 

This issue has been debated before in the peyronie's disease community. Whether low testosterone actually contributes to the development of PD, or instead contributes to the worsening of it, is unknown. Could it be that those with higher testosterone levels achieve more erections, which impede the development of scar tissue and/or stretch it as it forms?

Delicate tissue handling 

There is an increased rate of peyronie's disease amongst men following radical prostatectomy. It had been thought that cavernosal nerve damage was responsible for this, but this study hints at another potential contributing factor.

Association between peyronie's disease and dupuytren's disease 

A study linking dupuytren's contracture with peyronie's disease. This link has been known for many years, but it's a reasonably large study, so good to get what are likely fairly reliable percentages.
 ould take into account your erectile functioning when drawing conclusions about what treatment is right for you.

Traction therapy prior to penile prosthesis implantation 

An interesting study for men with shortened penis undergoing penile prosthesis implantation. Not only did traction device therapy allow these men to avoid length loss, it also promoted a small length gain in most of those taking part in the study. The duration that the traction device was worn for is much less than typically stated in most traction studies, but the results still show improvement. That's promising news.

Of course traction therapy isn't only useful for men with implants. It has been shown to reduce penile curvature in men with peyronie's disease. More info here.

Penetrative sexual activity in PD patients

A new study out this month from the Department of Urology, Manchester Royal Infirmary, Manchester, UK.

PDE5 Inhibitors and penile scar remodelling 

I haven't seen any previous reports specifically linking cialis with improvements in scarring. The study doesn't actually deal with penile curvature, so it's hard to know the real impact of the changes taking place. I had previously pondered whether the use of PDE5 inhibators in peyronie's disease extended beyond that of improved erectile functioning. The jury is still out on that one I guess, but this study does suggest that there might be more to its effectiveness than that.

Also of interest in this, and other peyronie's studies is "the length of time from onset to presentation". In this case it's 22 months. We need to get a firmer idea of during what time period oral treatments are effective and when they cease to be. Contrary to what opinion there currently is out there, I'm not convinced that we have anything like an answer to this question.

View the study here.


Circumcision in penile surgery

A new study suggests that circumcision shouldn't be viewed as routine part of penile surgery unless required. This is good news for those worried about being circumcised as part of a penile surgery procedure. On occasion, some surgeons have appeared to see circumcision as part of the natural process when undertaking surgery. Here we see that need not be the case. If you are set to undergo peyronie's surgery, you may wish to highlight this issue before hand.

 

Friday, 19 April 2013

Peyronie's Disease Petition

I receive this email from a visitor a couple of days back:

Hi,
 
I am suffering of some form of PD and today I have explored, that there
is a white-house-petition ongoing until 9th of May about PD and trying 
to focus the government on spending more money in researching a cure. My
 plea is, that you make an article/hint on your blog about it for the 
Americans reading your blog. 

Recognize Peyronie's Disease; A Quality of life condition "NOT" a 
lifestyle choice:  

(petition no longer available)

With kind regards
---

It's a shame that there are so few signatures so far, but that's all the more reason to sign it if you're in the US. Thanks.

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.

---------------------

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

----------

(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

-------------

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.)

Wednesday, 27 February 2013

Reconstructive Surgery for Peyronie's Disease

Surgery for peyronie's disease is a treatment option that benefits many men. While there can be down sides such as potential ED issues, shortening of the penis, and changes in the condition further down the line (though changes can of course happen with or without surgery) it's often a viable option for men with stable peyronie's. This is especially true when the extent of the penile curvature rules out options such as VED / traction in combination with oral treatments. These latter options are designed to soften and stretch the plaque - it's a more conservative approach.

While there are several posts and studies covering surgical solutions on the site, as well as valuable input from medical professional such as the comment underneath this surgery post it could be said that coverage of PD surgery here is not as complete as it could be. An area especially lacking is penile implant surgery, a type of procedure often carried out when the patient can no longer achieve a functional erection, on account of erectile dysfunction.

With this in mind, I was pleased to be sent a truly thorough document on penile reconstructive surgery for peyronie's disease called 'Atlas of Reconstructive Penile Surgery'. It can be downloaded here . This 40+ page document, brought to us by a renowned Italian urologist, includes a very detailed guide to prosthetic implants, including the type of implants available (non inflatable, inflatable etc) and lists the advantages and disadvantages of each. It also touches on the more functional types of penile surgery such as various grafting methods, nesbit procedure and so on. There are mentions of Dr Lue and David Ralph along the way, surgeons noted for their exertise. It's a very complete look at surgical approaches, with an emphasis on implants.

Note: The .pdf features graphic colour images of penile surgery. If you don't wish to see such images, you may want to give this a miss. You can always view non graphic peyronie's disease bend pictures here instead.






Wednesday, 20 February 2013

Xiaflex Experience and Analysis Article


Just a quick post to say that the Cure Peyronie's website has been updated to feature a lengthy write-up on the state of play and possible pros and cons of Xiaflex injections. It's very thorough, examining the clinical trial results, and even the author's own experience of taking part in the recent Xiaflex study (he was initially given a placebo, then later the real deal - read about how that went on the site).

It can all be read here . To navigate the article use the black arrow at the bottom of each page.

Tuesday, 19 February 2013

Xiaflex Phase III Study

Abstract 

Purpose

The Investigation for Maximal Peyronie’s Reduction Efficacy and Safety Studies (IMPRESS) I and II examined the clinical efficacy and safety of collagenase clostridium histolyticum (CCH) intralesional injections in subjects with Peyronie’s disease (PD). Co-primary outcomes in these identical phase 3 randomized, double-blind, placebo-controlled studies included percent change in penile curvature deformity and change in Peyronie’s Disease Questionnaire PD symptom bother score from baseline to 52 weeks.

Materials and Methods

The IMPRESS I (N=417) and II (N=415) studies examined CCH intralesional injections through a maximum of 4 treatment cycles, each separated by 6 weeks. Subjects received up to 8 injections of 0.58 mg CCH, 2 injections per cycle separated by approximately 24-72 hours, with the second injection in each followed 24-72 hours later by penile plaque modeling. Subjects were stratified by degree of penile curvature at baseline (30-60° versus 61-90°) and randomized to CCH or placebo (2:1 in favor of CCH).

Results

From a post-hoc meta-analysis of IMPRESS I and II data, CCH-treated subjects showed a mean 34% improvement in penile curvature deformity, a mean -17.0±14.8° change per subject, compared with a mean 18.2% improvement in placebo-treated subjects, a mean -9.3±13.6° change per subject. Mean change in PD symptom bother score was significantly improved in CCH-treated (-2.8±3.8) versus placebo (-1.8±3.5, p=0.0037) subjects. Three corporal rupture serious adverse events occurred and were all surgically repaired.

Conclusions

The IMPRESS I and II studies support the clinical efficacy and safety of CCH treatment for both the physical and psychological aspects of PD.

http://www.jurology.com/article/S0022-5347%2813%2900227-9/abstract

-Thoughts-

These results, while not astonishing are worth taking note of. Men who received Xiaflex injections as part of the Phase III study had a mean improvement of  34% vs 18% for those in the placebo group. This compares to a mean improvement of 29.7% in penile curvature and 11% for placebo in the Phase IIB study. This suggests to me that both the structure of the program and skill of the doctor injecting are meaningful factors when we're talking about outcomes.

The positive results for the placebo treated patients is, as it has been in previous Xiaflex studies, somewhat perplexing. It may be that the tendency to experience spontaneous improvement is greater than thought, though more likely is that the penile 'modelling procedure' (traction therapy) which forms part of the regimen, is responsible for the improvement . I'll keep an open mind about it. In either case, the take home from this is that Xiaflex isn't a miracle drug but certainly can help to reduce curvature of the penis. Side effects can be an issue with some men though, so it's all about what's right for the individual. These results are set to be published in the Journal or Urology mid way through the year.


An Email

Dear Peyronies-disease.co.uk,

I had an appointment with (name removed) who is the specialist surgeon at university hospital. The night before I went for the appointment I discovered my fourth plaque so I explained to him my desire to follow all courses of action available to me in order to prevent further advances in my disease. I asked him about traction treatments, colganese injections and vacuum treatment all of which he had the standard NHS answer for which is there are no proven clinic trials to support them. He also said that surgery would not be an option for me. By this point in time my frustrations
which have been building up for the last two years of less than wonderful treatment I feel I have had boiled over and  I explained to him how I felt that following some course of action which would at least give me hope of this not getting worse was better than doing sod all. He then explained that in his opinion I would never have the penis I did before the onset of the disease but he could see my point of view.

Fortunately he gave me a prescription for the pentoxifylline so I have been on that for three months now with no further plaques. He also arranged an appointment for a vacuum clinic which I attended and I have been following his prescribed morning and evening half hour sessions.  I have noticed a slight improvement in straightness over the last three months possibly only to the tune of 5 degrees but that is better than nothing. The wasted section has stayed as before. I also feel less discomfort when erect which is comforting. Could I possibly ask a couple of questions?

1) With regards the ved treatment they say to not over pump which I assume means to only pump to a comfortable stretch?
2) as it looks like I am not going to be one of the lucky ones where it clears to a certain extent by itself, can I expect more plaques over time if I dont stay on the pentoxifylline?
3) Will the plaques' soften over time or is their effect likely to be permanent?

thanks for your help and support.
------------------

Reply:

I don't think it's accurate for (name removed) to say that there are no clinical trials to support traction and injection therapy (or ved for the matter). I would agree that surgery wouldn't be suitable where there is current plaque development. Typically surgery is carried out after several months - often a year - of 'no change' in the condition. The problem is that urologists are trained to treat medical conditions, and often not with regard to mental health. As such they can sometimes appear to be cold and dispassionate about your plight, which is the exact opposite of what someone struggling with peyronie's disease needs emotionally. My belief is that there should be a two tiered approach, where you get to see a urologist  for surgical - or conservative - treatments, but also a counsellor to deal with the emotional issues that this horrible condition brings about. There's a culture of sweeping men's sexual health issues under the carpet, and of not treating them with the seriousness they deserve.

I'm really glad, however, that he prescribed pentoxifylline. It's no miracle drug, but it's potentially very useful and good to have that going for you. I'm glad you've benefitted from the ved too. It may only be a 5 degree improvement, but who is to say what would've happened without this regimen, in the negative sense? I'd certainly say that overpumping can be a problem. It sounds like you've already got a steady and sensible approach though, so I'd keep doing what you're doing. Some men do go into gung-ho mode and before you know it they have to take breaks of weeks or months from the ved. On rare occasions they may even do permanent damage. It's best to get a sense of what is safe and sensible and stick with that.

As for plaques, it's notoriously hard to predict what will happen, though the general consensus appears to be that when sticking with a mechanical regimen (ved, traction etc) and proven oral treatments like pentoxifylline (possibly CoQ10 too) that you're doing just about all that you can to exercise the penis, deter further scarring and make improvements from the position you find yourself at. Scars can certainly soften over time and pentox helps that. They can calcify too unfortuanately (which can make surgery a problem), but pentox is very good at reversing calcification, so I would think that if you're on it already that won't even be an issue.

Thanks,

Peyornies-disease.co.uk

(Posted with permission. Identifying information removed.)

Thoughts On Peyronie's and Sexuality

I remember seeing a PD forum post many moon ago that sparked a bit of a debate. A gay man posted that he wanted to speak with other gay peyronie's disease sufferers. The reaction from some was "why can't you speak to the group at large about it?", though others had a more nuanced view. The former is a perfectly valid point, but with the challenges that peyronie's disease brings I think it's important to try to put ourselves in everyone's shoes to create the optimal environment with regard to treatment and mental health. Just as a woman's perspective will be different from a man's (hence why there are some women orientated boards) a gay man's viewpoint could be slightly different to a straight man's depending on his individual circumstances.

Of course with regard to general treatment options it wouldn't be, that would be the same across the board. There are finer points to consider though. Some gay men may feel more comfortable discussing sexual matters together than part of a wider group. That's likely true of heterosexual men too. There may be a tendancy to want to try to avoid conflict with other's world views and so forth. Typically this may be something that could be thrashed out in public, but we have to bear in mind that often men seeking help for peyronie's disease are at a very low ebb as it is, and so are looking for an environment where they do not have to validate themselves on additional levels.

Another aspect to consider is that two gay men with peyronie's disease could potentially form a relationship together. As with any peyronie's sufferer the extent of their curvature and pain would dictate how sexually active they could be, but still it's a point worth raising. Where two people in a relationship have exactly the same health problem it's clearly a somewhat different situation to where one has a problem that the partner appreciates, but can't truly understand, or at the very least is not physically attached to. Also, what is sexually activity to one person, may be different to another. Sexual roles for instance. I certainly feel that it would be unlikely for gay men to openly discuss such matters on public forums without there being some kind of negative reaction on occasion.

It ranges from difficult to impossible to put a number on how many men actually suffer from peyronie's disease. It's very possible that there may not even be a demand for a gay specific peyronie's forum, but maybe a sub board on an existing board, who knows? Having peyronie's disease isn't exactly something that people advertise far and wide (try looking up 'peyronie's disease' on billion + member facebook, and see how very few men are 'out' about their PD) and so it would appear that if any of these concerns are to be met, it's unlikely that would happen outside of a PD community environment.

This whole post may come across as a bit 'niche within a niche', but realistically peyronie's disease is an adopted minority status in some sense. One that brings with it a whole host of unique and challenging problems - let's not forget that gay men were specifically excluded from certain Xiaflex clinical trials. If we appreciate that, it's also important for us to realise that all men dealing with this issue, gay and straight, deserve to be able to make the very best of a bad situation without additional hurdles along the way.

Thursday, 14 February 2013

Peyronie's Disease Plication Comment

It's always nice when site visitors take the time to comment on updates, so I thought I'd highlight one received earlier in the month which I feel really adds something to the post it pertains to. It's a comment from a urologist named JB, under this peyronie's disease surgery post from August 2009. He clearly took quite some time to make the comment and it's very thorough in relation to plication surgery and what to expect from it. He also touches on other types of surgical procedures as well as non surgical approaches to PD. Check it out.

Monday, 21 January 2013

You Can Help

I'm of the view that we're quite understanding nowadays with regard to women's problems. It's drummed into us culturally, that we must be very sensitive around certain issues. Men on the other hand suffer in that they are both hesitant to raise intimate concerns with their doctor and are somewhat less likely to receive an empathetic ear. By no means is this a given across the board though, which is why I feel it's important to shine a light on medical professionals and practices that provide both a professional and compassionate service.

It's always extremely helpful to hear directly from peyronie's disease sufferers / patients. Any GP or urologist experience you can detail, both good or bad, can help us to build on a body of information that helps and can be shared with the whole peyronie's disease community. There are too many accounts of people having negative interactions when presenting this delicate condition to their GP or urologist. From an emotional and practical standpoint making the right decisions early on can make a real difference with regard to treatment and mental well being. Please do contact us if you feel that you have anything to share with us.

Monday, 7 January 2013

2013


I haven't had an awful lot to say for myself lately, but never fear, an update is here. As the site has been worked on over time it has come to include the vast majority of currently available treatment options and those on the horizon. It's only natural that there isn't something to report every week or even every month. Where there are new developments though, I will certainly continue to highlight them. I wouldn't be surprised to see Xiaflex become more prominent in term of injectable treatments over the coming year or so, but it's success may come down to the skill of the doctor doing the injecting. Further down the line I would say that stem cell treatments offer the key to treatment peyronie's disease and many other conditions. There is always forward movement, even if it is slower than we'd hope.

Studies continue to emerge relating to peyronie's disease, and it's comforting to know that progress is being made, knowledge combined, and that the condition does have the attention of at least some in the medical profession. There have been a number of peyonie's surgery studies released of late for instance and one relating to the psychological impact of peyronie's disease which should be an eye opener to those who view this is a purely physical condition. It wasn't so long ago really - over the last 2,3 years - that meaningful pentoxifylline, Coq10, traction and VED studies emerged. Over time the tools available to combat peyronie's do become more numerous.

If you find yourself in a position where you're dealing with PD in 2013, I'd say that it's important to try to be as pro active as positive, and to thoroughly research the condition yourself. Do not shy away from the condition or listen to anyone, medical professional or otherwise, giving you "wait and see" advice that leads to nothing but wasting valuable treatment time. Getting started on conservative treatments like pentoxifylline, VED, traction and so on should be high on your agenda.  Surgery is clearly an option too, though only once the conditon is stable. Wherever you're at with peyronie's, hang on in there.