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Author Topic: New member, Peyronie Disease diagnosed 2 months ago  (Read 2126 times)

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MatP

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New member, Peyronie Disease diagnosed 2 months ago
« on: October 22, 2014, 04:12:04 PM »

Hi all,

I've been reading this forum and many other resources on the web in order to better understand what is at stake with this psychologically and physically devastating disease.

I'm 33 years old, healthy (at least that's I was thinking until recently), doing sports regularly.
As far as I remember, I always had a slight bend on the left side, nothing bothering.
I've been sexually active since I was 15, had several girlfriends, some one night stand and also long-term relationships.
My boners were rock hard, and even 1 year ago, was able to have sex, reach orgasm, and to go for it again a few minutes after (if my gf was enticing enough, and/or if I was deep in love with her). I may still be able to achieve this, but I don't dare to try since I'm afraid it may worsen my condition.
Depending on my gf, and as the climax was building up, we could get quite rough, and quite regularly we were having sex with penetration for more than 45mn, and sometimes a few times a in a row.
Since I'm sexually active, I have felt sometimes pains after having done too rough moves that may have bent suddenly my penis. Nothing I ever worried about since it was hurting a few minutes, and then it was fine.

Diagnostics:
In 2013, while I was deep in love with my (now ex-)gf, I felt pain a few seconds before reaching orgasm, I coped with it, and as I reached orgasm, the pain seemed to disappear.
Weeks after noticing these symptoms, I had from time to time pains in my penis, and I decided to visit my doctor.
He detected in urea microscopic blood and I was diagnosed with kidney stones (confirmed by medical imagery).
I've always been eating healthy with vegetables and low fat food, drinking a lot of water (especially 1 brand of water which has a high amount of calcium, 450mn per liters, don't know if it can lead to too much calcium absortion since I'm drinking about 2 liters a day) however about 1-2 years prior developping kidney stones, I had the bad habit to eat cereals and chocolate before going to bed.)
I assume that's the origin of my kidney stones (which I believe were primarily calcium oxalate).
Another symptom of this bad habit was that I was feeling my belly (stomach/liver?, don't know) as if it was inflammed.
Now I refrain eating too much before going to bed, but regularly, I feel ache/inflammation in my belly.

Couple of months ago, I woke up with my usual morning boner, and I noticed that at about 1 third from the tip, I have a girth reduction (hourglass in Peyronies Disease terminology, reduction is about a bit less than 1 inch. I'm now about 3.9 inches girth, while the base of my penis is still about 4.7. Regarding length, I believe that before Peyronies Disease my length was around 5.9 inches, while now it is around 4.7).
The same day I noticed that, I got an appointment with my urologist .
It's impressive since the day before everything seemed fine (even though I suspect that a slight decrease in length was already ongoing since a few months. Actually I was believing that due to less sex practice since several months with my gf, less blood was flowing hence less expansion) and suddenly, bang, everything changed.
I believe the plaque is circular (because of the hourglass), but mainly prominent on left and right side of the shaft were I can feel it when touching. The doctor mentioned that it started to calcify.

For other reasons, my gf and I ended up our relationship (she is not aware that I was recently diagnosed with Peyronies Disease because by coincidence we were not having sex several weeks before the diagnostic, and since I knew that it was very likely we were about to end our relationship, I believed it was better to not mention it, first because that's the kind of disease you want to keep closely private, and secondly, because I didn't want her to potentially suffer from it, for instance if we would have decided to continue our relationship, she may have felt that she had to support me, and I don't want my gf to be with me because of a disease. Then I decided to face this quite depressive condition alone).

Treatment:
2 months ago, my doctor told me to put twice daily a cream based on Verapamil.
On top of that, I decided to take supplements (Vitamin E, Q10, Acetyl L-Carnitine, Omega-3), but so far, I would say no change except maybe that I believe the plaque increased a bit (or further calcified).

In about 1 month I have another appointment with my urologist, and I've also booked an appointment with a gastroenterologist since I still regularly feel ache/inflammation in my belly, and from what I understood, inflammations can be a trigger for Peyronies Disease.

That's where I'm so far, with all the psychological impact you can imagine.

Cheers.
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NeoV

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Re: New member, Peyronie Disease diagnosed 2 months ago
« Reply #1 on: October 22, 2014, 11:19:17 PM »

Thanks for sharing your story, I'm sorry to hear about this.

Verapamil cream does not have good support by our members nor does it have good studies behind it that I'm aware of.

See a specialist and I encorage you to try VED therapy, traction, and consider pentox and low dose cialis. Personally I avoided all drugs and only use the therapies and supplements.

Hopefully after the disease settles down you will have some improvement.

MatP

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Re: New member, Peyronie Disease diagnosed 2 months ago
« Reply #3 on: October 23, 2014, 10:02:26 AM »

Thanks for your support.
Indeed the survival guide is great.

I've also read studies about Verapamil and indeed it seems that Verapamil is more effective if applied through iontophoresis (which enables the product to penetrate the plaque), but apparently verapamil simply applied as a cream is the common treatment here (I discussed with the pharmacist selling this product for my area, and they sell about 45 tubes per month, with apparently several customers who had significative improvements). I will ask him what he thinks about iontophoresis.
Anyway, I booked an appointment with a 2nd urologist who seems to be the "specialist" around here (even if I doubt that there's true Peyronies Disease specialists here, which is surprising since my understanding is that there's thousands of affected persons in my area), will see if he even mention Pentox. If not I will mention it, but I anticipate that he will not recommend it.

Regarding VED, I tried the X30 for about 2 days (morning and evening), since water-based VED may be safer, and applied a mild vacuum for a limited time.
After a couple of days, I had the impression that indeed I'm feeling the tissue streching a bit, but then I experienced soft pain. Not sure VED was the trigger, but I would think so.
Maybe it's still too early for me to do VED? I may still be in the acute phase?
I'm abit afraid that it would generate micro-trauma hence causing more plaque

In the meantime of my next appointments, I will continue verapamil and supplements.
Btw, there's many theories/studies (non-Peyronies Disease related) mentioning that supplements doesn't work, and that actually it may even be detrimental due to the other substances included in the caps etc, and if taking 10+ caps per day, I start to believe that it may do more harm than good.
What do you think?

Regarding L-arginine, did you heard about Citrulline Malate?
It seems to be more beneficial than arginine, at least for sport, but I've no clue for Peyronies Disease.

I would love to be able to absord all the necessary vitamins, coenzyme, anti-inflammatory,..., only via healthy food, and I was already trying to do so before being diagnosed, but that's a huge challenge.
Would need a cooker, or a company that can package all these could stuff either in a powder or that sell a basket with all the necessary ingredients/vegetables/fruits/seeds/...
Actually I'm suprised that no company takes the opportunity of the Peyronies Disease-"market" (which is, when reading the statistics, not a niche market but in fact quite big market) to package all these supplements in a single product.
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Jonbinspain

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Re: New member, Peyronie Disease diagnosed 2 months ago
« Reply #4 on: October 23, 2014, 10:44:06 AM »

MatP;

In my opinion, Citrulline Malate would be better. The difference is that L Arginine taken as a supplement produces a spike in Plasma arginine levels. Citrulline Malate, taken as a supplement, converts to Arginine in the kidneys. Thus producing more sustained levels of Plasma Arginine.

I'm not familiar with Topical Verapamil, but I would guess that it would not be effective in penetrating the dermis, which it would need to do to reach the problem.
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skunkworks

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Re: New member, Peyronie Disease diagnosed 2 months ago
« Reply #5 on: October 23, 2014, 11:08:29 AM »

Yeah actual studies basically rule out verapamil cream as a treatment, it just doesn't show results.

LWillisjr

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Re: New member, Peyronie Disease diagnosed 2 months ago
« Reply #6 on: October 28, 2014, 05:53:38 PM »

I'm locking this topic as an introductory topic. Feel free to post additional questions in the appropriate section of the forum.
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Les - 10 yrs Peyronies Disease free
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