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Other Peyronies Disease Discussion Boards => Progression of Peyronies Disease => Topic started by: Rachel on March 16, 2010, 05:22:18 AM

Title: Can someone explain the process please?
Post by: Rachel on March 16, 2010, 05:22:18 AM
I am so confused. I am so worried.

I can live with a bent penis, I can live without penetration, what I dont seem to understand is the progress of the disease, as it has 3 phases: from what I read in the Iran Pentox Report.

1. Acute and active with pain - permenent spontaneous pain or pain with erection (even without erection) 6-18 months
2. Early chronic stage with pain and some curvature starting to show
3. Chronic stable phase - with pain again during erection, and increased curvature

Doctors say they will operate when the pain has gone and there is no observed worsening of the condition regarding a curve - so, when does the pain subside - or do some people just get pain, and it stays and the condition gets progressively worse and worse - so cant have an operation?

So peronies will progressivley get worse over time and the only real answer will be to operate? But some people here are stating they are happy with thier curve etc so they are in which phase... with no pain? And just get creative with 'lovemaking'?

If a man can 'live' with the disease, I believe he can still have a fulfilled life, he is still able to smile, and love emotionally, support, and maybe even have a family? I know it depends on the attutide of the man.

Sorry if I am not explaining this too well...

R

Title: Re: Can someone explain the process please?
Post by: chiguy on March 16, 2010, 01:01:41 PM
Rachel,

It is very hard to predict this disease. There are two generally accepted phases; active and chronic. In the active phase, which lasts up to 18 months, there is pain and curvature. The chronic phase is where it has stabilized and the pain disappears. Most patients do not experience pain at this point and the curvature MIGHT resolve somewhat. There generally isn't a flareup after this, but who knows for sure.

The use of pentox, l-arginine, and other medications/supplements mitigate the symptoms.

How bad is the curvature? Anything over 30 degrees is considered severe and surgery will be considered after exhausting other options. Traction devices or a VED can also be used to decrease curvature. There is plenty of information on this forum about both options.

In my case, I woke up one day with curvature and pain. It didn't get worse. The pain eventually went away. The curvature is slowly going away with use of pentox and a traction device.
Title: Re: Can someone explain the process please?
Post by: Brightdog on August 12, 2010, 02:37:33 PM
For me, the progress was pretty much exactly as you outlined - with fairly long stable periods. Even when I was experiencing a 90 degree angle to the side, I was able to enjoy creative lovemaking as long as nothing put pressure on my penis. And that was just fine - for a couple of years.

Then things got worse, and it hurt to have an erection at all.

That's when you have a serious problem - because you can easily have a fulfilling sex life without penetration, but it's awfully hard to smile and enjoy any sort of sexual activity when arousal hurts. I had coped very well with Peyronies Disease up to that point, but I found I was avoiding ANY physical intimacy with my wife because it hurt.

I had the full corrective surgery route two weeks ago - not an implant, but the excision/graft/plication triple whammy to correct my 160 degree bend. Despite some post-op bleeding and infection, things are looking very promising. And I experienced NO post-op pain. I have not had to take so much as a Tylenol. Yes, the surgery can seem pretty drastic, and it is not undertaken lightly. And I did find out an acquaintance had had similar surgery (he didn't have the full procedures I had) and he sent me pictures of the end result. He's not happy - he thinks his penis looks odd. Frankly, I told him I'd be perfectly happy if mine turned out like that: usable!

One of the things to remember is that the goal might not be to "get your old penis back". At some point, the goal is to restore enough function that you can enjoy being sexual again. This is harder on people who don't have regular partners - my friend is too self-conscious about his penis to let anyone see it, so although he can now have a sex life again, he doesn't. My wife and I are both curious about what the long-term will bring for me - and in the meantime, I am looking forward to returning to the place where we can be intimate without pain.
Title: Re: Can someone explain the process please?
Post by: hb on August 13, 2010, 10:34:24 AM
Hi

There a few men that never have any pain, only the curve. That was my case, I never had any pain at all but I have a curve like a banana. It points up. I am taking all the OTC meds and using a VED.
Title: Re: Can someone explain the process please?
Post by: Fred22 on August 27, 2010, 10:36:20 AM
Quote from: hb on August 13, 2010, 10:34:24 AM
Hi

There a few men that never have any pain, only the curve. That was my case, I never had any pain at all but I have a curve like a banana. It points up. I am taking all the OTC meds and using a VED.

Then there are cases similar to mine and a few others on this forum who experience long term pain.  Mine has been with me, flaccid or erect for over 4 years.  there's at least one member here who has had Peyronie's for 30 years and still has periods where there is a progression of the Peyronie's accompanied by pain.  So the variations are all over the map.  I'm not sure there is any such thing as a "typical" case of Peyronie's.
Title: Re: Can someone explain the process please?
Post by: Rachel on August 27, 2010, 11:57:38 AM
Thank you for all your replies.

Since I last posted, we have seen a great Urologist in the UK. He is based in Bristol - with the Bristol Urology Associates. He has prescribed Pentox 3 times a day and at the moment the pain has gone  :) and although there is a bend, it has seemed to stabilise at about 30 degrees. At least we can still have sex, but just have to be carefull, as the hinge is weak.

Fingers crossed we will not see anymore pain. The urologist is VERY interested to see how the Pentox works, as his practice have never prescribed it before, but is very understanding and willing to work with us.

I suggest any UK members on this forum who are having trouble getting hold of Pentox to try this group in the UK.

One question... if pentox is stopped does pain return?

All the best to you all for now.

My thoughs are with you all.

x
Title: Re: Can someone explain the process please?
Post by: Skjaldborg on August 27, 2010, 12:14:28 PM
 "One question... if pentox is stopped does pain return?"

It shouldn't. Pentox helps treat the inflammation by bringing more oxygen to the tissue, which promotes actual healing; i.e. it's not like taking an aspirin.

I took pentox for 8 months and since I have stopped I have felt no new pain.

-Skjald
Title: Re: Can someone explain the process please?
Post by: Bobinlondon on October 31, 2022, 05:29:04 AM
Rachel above stated it is hard to get Pentox prescribed in the UK. If anyone is interested I do have a way of getting Pentox in the UK.

Please send me a direct message for details.

Best wishes,


Bob