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Here We Go - I Have Peyronie's


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Hi. My name's Andy... I'm currently 56 years old (May 2016) and live in England. I have two young adult children and divorced amicably in 2002. I've had several relationships since then all having had a very healthy and active sex life included.

Middle age man walking along the beach thinking

I am, though, now just starting to deal with the discovery of having and coping with the increasingly adverse effects of Peyronie's.

In January of 2015 I noticed that those early morning waking erections we all know of and that I pretty much always used to get seemed to be very painful, somewhere in the glans region. Being barely awake I didn't really worry unduly and there was no problem when fully awake and erection was through arousal so I paid no real attention to it and the problem seemed to pass anyway.

However, a month later, while investigating a chronic lower left abdominal quadrant pain a 6 cm renal carcinoma was discovered in my right kidney.

This was duly removed four weeks later via a large 25 cm incision across my abdomen. Not a pleasant experience and all a bit bemusing - I thought I might have colonic cancer (the worry exacerbated by knowledge gained from working on colonic cancers for a PhD in my 20s!) but actually had another silent tumour that would probably have remained undiscovered until secondaries were developing. To be honest, I felt a bit of a fraud even although I clearly had a major problem!

Anyway, about a month after surgery, in May last year I did notice that my penis seemed half an inch or so shorter than usual during intercourse with my then partner although she didn't notice at the time. For one reason or another we separated shortly after although we remain good friends.

A couple of months later I started a new relationship and this time I really noticed there was an issue with a bend to the left and significant pain upon gaining erection at the point of the deformation. My partner K remained unaware as the deformation was only slight but I could see and feel clearly a plaque on the left near the base of my penis. Additionally, I also noticed I had developed Dupuytren's contracture on my right hand.

During this time I learned that my brother (4 years younger and living in Australia) was having a devastating time with Peyronie's himself with full waisting. He thought it relatively insignificant compared to my more existential medical problem but it was clearly affecting him very badly whereas I was more bemused than traumatised.

Upon reading more and then raising the issue of Peyronie's and Dupuytren's with my parents it transpired that my father has both conditions as did my grandfather. "Thanks for warning us." was my semi-humorous response (I have now warned my 21 year old son to be hyper aware!). I speculated to myself that the physiological insult of the cancer and/or surgery might have initiated these changes although I do recall a buckling trauma a couple of years ago.

I raised the issue with K and she was tremendously supportive and after a while the situation seemed to stabilize, the pain dissipated and it was simply a case of being careful not to cause further trauma during intercourse. In fact the more sex we had, the better it all seemed to be. I had no issues at all with arousal and I seemed to be regaining my original length when erect (a fairly standard 6.5 - 7.0 inches), there was just this deviation and slight indentation at the site of the plaque but nothing really untoward.

Through one of the many check-ups to monitor my recovery from surgery, I raised this issue with my GP but at that stage it wasn't presenting as a major problem and I had sufficient knowledge to understand that I might have had a shortened acute phase and was now stable. The evidence for Vitamin E, ubiquinol, and other agents being effective seemed very equivocal and not worth pursuing. There was no intervention required. Better just to remain positive and not worry.

Unfortunately, the relationship with K was short-lived and finished in October last year and until a few weeks ago I have been single. My brother's condition has continued to deteriorate during this time and his marriage is now struggling as he fights the commensurate depression.

Happy couple walking along the beach

However, I have just met another girl and I really like her. This has potential to be something significant.

I told N about my condition, explained that it hadn't been a problem to date, but that I would understand if she wanted to walk away.

However, she feels the same about me and has stayed in expectation of developing something special and things inevitably then spiralled to full intimacy.

I have only ever failed to gain an erection on just one occasion before some ten or more years ago and that was resolved within a couple of hours. In fact I tend to have the opposite issue (if it can be seen as that) of maintaining an erection long after it's no longer "required". This can, of course, have advantages! Imagine my distress then when the opportunity to consummate this latest romance arose and I didn't. Rise that is!

Despite every attempt and stimulation, I could gain nothing more than a partial erection (a "lazy lob-on" in British parlance), almost enough, but not quite to enable intercourse and now accompanied by a that same burning pain at the point of the plaque that I experienced . This state can be maintained, I can even climax, but I cannot gain full hardness and although I have now managed penetration on one ultimately mutually unsatisfactory occasion it has become a major psychological issue for me.

It's now difficult to separate the physiological from the psychological. And this is where I'm at as I write this. The relationship is in the balance although I remain upbeat if frustrated. I will see my GP this week and pursue Viagra if that is suitable (I now understand why my spam box is full of all those emails!) and I will look at all the other options, VED in particular, as well.

As you can imagine, I am going to be a bit hacked off if my condition develops as devastatingly as my brother's seems to be doing and lose a full and satisfying sex life, lose this latest relationship even. This is especially true as I've also had to give up playing rugby as I recover from this major surgery, although at 56 years old now I should have given up playing some years ago, as that would remain a major outlet for me.

As I write this, my brain is projecting pain where there probably is none, but I remain hopeful of resolving some of the issues and will use the experiences of others on here and other sites (thanks for all the other postings) to guide my progress. All I can do is remain as optimistic as possible and hopefully retain a sense of humour about it. I now know what my grandfather meant when he said "You have no idea how bad it gets"! He wasn't joking.



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Comments On This Article

Birgir May 3rd, 2016

Dear Andy

I'm very sorry to hear about your condition and guess it does not help how badly this is affecting your brother. Unfortunately, many relationships have broken down because of Peyronie's. But other have become stronger. Your parents and grandparents marriages may have been among them.

I'm very pleased to hear that your new partner is supportive. The right women are. I don't see any reason why the two of you cannot get through this together. What breaks relationships is usually not the Peyronie's as such (bent penis, less or different sex). It is the affect it can have on the man's mental state. Remaining upbeat and keeping the humour is vital for most relationships to survive... anything!

Saying that, this will be challenging for both of you. It is important that you support each other. There are some articles on my website about Getting Through Peyronie's Together that I hope you both will find helpful. And some advice especially for Peyronie's Partners.

Then there are Forums and groups for men with Peyronie's disease and most include support for partners as well. I have often been contacted by Peyronie's partners and sometimes from mothers seeking advice for their sons. I, and my wife, try to support these women as best we can. So if your partner has any questions that either me, or my wife, can help with, tell her she can contact us anytime.

The same goes for your brother and son. You are so right to warn your son. There is no need for alarming him, just make sure he is aware of the condition and takes care not to attempt sexual intercourse unless the penis is fully hard and avoid putting awkward strain on his penis.

But... back to you. I think you have number of good things going for you. First your attitude and then that you are in a good relationship.

And importantly... it sounds like you have reached the stable phase without too deformed penis, i.e. regained your original length with slight indentation and deviation. That is really good news.

So the challenge is "just" the erection quality. And there are things that can help with that, including vacuum pumps and Viagra. But the first step is to see a doctor and elimate any physiological causes. And you have already arranged that! Taking the first step is always the most important step in getting anywhere.

I have full confident in you (and your partner) as long as you keep your head "together". Don’t let others experience (including your brothers and grandfather) get you down. And try to find something else you can enjoy to help you let off some steam… though of course realize that nothing can replace Rugby!

I wish you all the best with your treatment and your relationship. I hope you will keep us posted about your progress and if there is anything else I may be able to assist you (or other family members), just be in touch.

Kind regards,

Birgir

Ps.  As you have Dupuytren's as well I'm assuming you know of the British Dupuytren's Society. There is also an excellent Closed Facebook Group that you may be interested in joining if not already done so.


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Hello, I'm Birgir

This website is based on my experience of Peyronie's disease