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The Viking Disease
The Fearsome Four – Peyronie's, Dupuytren's, Ledderhose Disease and Frozen Shoulder

Peyronie's Question

Hi,

Just thought I would contact you for some advice if that is ok!

Viking statue

When I was 19 or 20 years old I suffered from what I believe to be called knuckle pads; these caused the middle joints of my fingers of both hands to swell and become hard lumps. I think they occurred after I had knocked the knuckles and they have now mostly disappeared.

At the age of 40 I had a frozen shoulder that lasted for about a year. The doctor gave me an injection in it which did not help but after about 13 months it cleared up and now the shoulder gives me no trouble at all.

When I was about 50 I got one or two lumps on the tendon on the soles of both feet. They do not hurt or hinder me in any way so I have just ignored them.

When I was about 55 I fell off a ladder and saved myself with the palm of my left hand. I now have lots of solid lumps on that palm but the movement of my fingers is not restricted at all and my hand is not clawing.

I am now 68 and about six months ago after some rather rough sex I found that my penis now has an upward curve on it. My penis also seems to be smaller and I have difficulty getting an erection and ejaculating. This is not of great concern to me as I have an understanding wife and can still enjoy myself.

I have not seen the doctor about any of these things apart from the frozen shoulder. I was wondering if you think I should just wait as from what I have read my penis might get better with time or do you think I should see a doctor? Also is it possible to give me some advice on what else I might be prone to as I believe all these things might be related and the result of a genetic condition.

Thanking you in anticipation.

Kind regards,
C

My Peyronie's Answer

Dear C

First, for me personally, the name Viking Disease feels very adapt, as I'm Scandinavian and I got Peyronie's first and have recently just noticed small lump in the palm of one hand (Dupuytren's).

So yes, there seems to be link between Peyronie's disease and other genetic disorders, like some connective tissue disorder. Around 30% of Peyronie's sufferers also have hardened tissue in other parts of the body, mainly in the palm (Dupuytren’s contracture) or foot (Ledderhose's disease). In addition, there is Frozen Shoulder.

And unfortunately sounds like you got the lot but fortunately sounds like you have relatively mild version of each as does not seem to hamper your daily life. That is really great and you should consider yourself fortunate in that respect.

However, I recommend you research and monitor your conditions, i.e. so you know if at any point might be worth seeking professional help. I don't know where you are located in the world but I am a Trustee of the British Dupuytren’s Society Opens in new window symbol which offers support and advice about all the conditions previously mentioned.

I also like to recommend the Dupuytren's Disease Support Group Opens in new window symbol. Again, they support people with all the conditions and operate very active closed (members only) Support Group on Facebook.

Regarding your Peyronie's condition. If you only noticed the first symptoms 6 months ago, than you are most likely in the acute phase of the disease (usually last between 12 – 18 months).

During this stage the disease can continue to progress. It is therefore important to take care when having sexual intercourse during this phase. It is especially important to make sure the erection is firm enough, i.e. to avoid buckling which can aggravate the condition.

It is estimated that between 5-15% of cases rectify themselves but the rest stay the same or get worse. So should you see a doctor or not?

In the case, that men are not overly concerned, in stable relationship and can enjoy satisfying sex life… then just accepting what is and learn to live with it may be perfectly good and wise option. However, I still recommend men only take that decision after seriously researching and considering their situation and options.

Especially men still in their acute phase because during this phase men have more treatment options available to them and can expect better results. Also, because their condition might still be progressing and no one likes to end up in the situation "if only I had..."

So I still think it is worth seeing a doctor, someone with experience of Peyronie's disease (not all Urologists are). Even if the curvature is, and stays, mild and does not interfere with your sex life and your penis reduction is not bothering you, there are things that can be done to improve your erection quality that could help you to stay sexually active for longer.

Finally, you are very fortunate to have a supportive partner. I personally know how important role good partners play.

I hope this is some help and I wish you all the best in the future.

Best regards,

Birgir
www.MyPeyronies.com

Comments On This Article

  1. C December 16th, 2016

    Thank you very much for your prompt reply which I will consider.

    I live near London in the UK and as I have not bothered to visit the doctor about any of the other conditions will probably just hope that the Peyronie’s disease improves with time. 

    I have been amazed that the knuckle pads I had, which were very hard, large and unsightly have over the last 20 years virtually disappeared. I have put most of my complaints down to trauma of some kind or other and hopefully they will all improve with time. 

    Thank you got your help.

    Kind regards,

    C

    • Birgir Deceomber 16th, 2016

      You are very welcome.

      Have to say you are very fortunate, considering you have an experience from all the conditions.

      Just be "aware", i.e. if any of your conditions "flares" up again at some point. Especially in the case of Peyronie's. I recommend you monitor your condition for the next 12 months. If things get worse, then consider seeing a specialist. There are some good ones in London.

      I tend to emphasize that men should see a doctor and the sooner the better. This is because I hear from too many that regret not doing so earlier. However, in some cases (and you are one of them) I feel men may be better off if they just learn to "live with it", e.g. men in stable relationships with mild enough condition to allow them to have satisfying sex life.

      As there is no cure and some of the treatments are very draining (physically, mentally and financially) and without guaranteed results… going down the treatment route can cause bigger troubles than it solves. Sometimes it can be difficult for men to stop but sometimes stopping is the best thing men can do.

      I wish you all the best.

      Kind regards,

      Birgir

      Ps. for information purposes, attaching this article from my fellow BDS Trustee, little history of Dupuytren's Opens in new window symbol

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Hello, I'm Birgir

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