Peyronie's disease and radiotherapy

User

Posted 05 Oct 2021 at 13:14

Dear all,

I had radiotherapy at the start of 2019, which went well, and life is pretty much back to normal again. Over the last year, though, I've noticed the increasing onset of "Peyronie's disease", which is a curvature of the erect penis due to the build-up of fibrous deposits in the channels that cause erection, to the extent that it's now virtually impossible, and extremely uncomfortable, to achieve penetration.

My research suggests that this condition is most common in men between 40 and 60, and I'm 59, so right in the middle of that range anyway, but I can't help but wonder if it might have been triggered by radiation tissue damage during RT?

Made an appointment to see my GP about it tomorrow, so I'll see what he suggests. It is a treatable condition, apparently, but I suspect that it won't be regarded as high priority with the current pressure on the NHS 🙂.

Hey ho!

Chris

User

Posted 06 Oct 2021 at 12:50

Just back from the GP. Really kind and considerate chap. He's referring me to urology.

Cheers,

Chris

User

Posted 02 Nov 2022 at 19:55

Thanks for asking.

A very slow process, unfortunately. I was referred to urology at my local hospital. Saw them in May and they referred me on to a regional unit which is a centre of expertise for this condition. I'm still waiting to hear from them.

Chris

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User

Posted 05 Oct 2021 at 15:32

I don't think this is the radiotherapy (the penis out outside the radiation field, except for the penis bulb in your perineum). If it happened while having fewer erections due to hormone therapy, then that can do it.

If you have a pump, you might try that, although if the cause isn't lack of use, I don't know if that will help or not.

User

Posted 05 Oct 2021 at 15:56

On this forum, the most common cause of Peyronie's disease is atrophy, closely followed by scar tissue from Caverject (other brands are available) or incorrect use of the vacuum. However, in the rest of the population, a common cause is physical damage - either from an accident / trauma to the area or from attempting penetration while not sufficiently erect. I have a good friend who has had Peyronie's since his early 20s as a result of attempting sexual intercourse while drunk.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Oct 2021 at 17:12

Atrophy is entirely possible given that I essentially had no erections for a year due to the loss of libido associated with HT! The reason I mentioned RT is that I had "whole pelvis" irradiation due to a concern about micro mets outside the prostate because of a PSA level (31) that was deemed to be anomalously high for the G3+4 that the biopsy found.

If I do get referred for this when I see my GP tomorrow, as I'm hoping I shall, I'll certainly raise the issue of RT with the consultant, although I suppose the cause isn't really of that much relevance now.

I imagine a urology referral is likely, or would it be an ED clinic?

Cheers,

Chris

Edited by member 05 Oct 2021 at 17:14 | Reason: Not specified

User

Posted 05 Oct 2021 at 17:36

Urology or andrology, usually

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 05 Oct 2021 at 19:13

Originally Posted by: Online Community Member

On this forum, the most common cause of Peyronie's disease is atrophy, closely followed by .... and incorrect use of the vacuum.

what would I need to be doing incorrectly to cause this ?
I ask as I have noticed a very slight increase in curve since my RP and the use of the SOMAerect response (RP in March , vacuum used 3 times a week from 5 weeks after op). Had a bit of a curve to the left for as long as I can remember, but recently I have noticed a bit more. It’s a definitely a smooth curve not a bend like some of the horrific pictures you see when you google Peyronie’s !!!

Thanks

User

Posted 06 Oct 2021 at 01:26

Pumping too quickly, pumping too much so that there is too great a vacuum inside the tube, releasing the vacuum too quickly, injury from not removing the restriction ring the correct way. Leaving the ring on too long could also cause some damage although I think that would be more serious than a curving penis.

Medical grade pumps have a vacuum restriction built in so that you can't over-pump but cheap versions often don't.

Also worth noting that while some doctors will recommend using a pump to men who already have the start of Peyronie's disease, in the hope that it will help straighten them out, there is little science to support this. I have heard that some doctors / ED nurses will refuse to prescribe a pump if you already have Peyronie's because there is a suspicion that it can make it worse.

Edited by member 06 Oct 2021 at 01:32 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Oct 2021 at 01:28

Also worth noting that men who have had RP are at higher risk of developing Peyronie's disease so it may be to do with the op rather than your pumping technique.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Oct 2021 at 12:50

Just back from the GP. Really kind and considerate chap. He's referring me to urology.

Cheers,

Chris

User

Posted 02 Nov 2022 at 16:04

Hi Chris, what was the outcome for you regarding this issue?

User

Posted 02 Nov 2022 at 19:55

Thanks for asking.

Chris

User

Posted 05 Nov 2022 at 08:02

Sorry to hear that you are waiting so long to discuss this issue with some one. What may be low on the NHS list of priorities is absolutely at the top of yours.

Please post if/when you get any further with this issue.

Take care,

Will.

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