Peyronies and Fibrosis

[Kangy]

Hi Everyone,

I didnt realize their were any forums for peyronies and am happy to be here.

Wanted to get thoughts from the seasoned folks on here.

Im 35. have had a congenital curvature downward of about 10 degrees forever. About 2 years ago i noticed it was worsening. Went to a urologist, was diagnosed with peyronies based on a physical exam - my curvature had worsened to around 35 degrees. I started using restorex, taking pentoxi and Cialis. I didnt see much of an improvement. A few months ago i went to Cali to have shockwave treatment done - i made sure the clinic was legit and that the device they were using had clinical efficacy. After the first treatment i noticed some discomfort and after the second one i noticed pain. Talked to clinician and my urologist and they told me they'd never had anyone have pain before. I stopped treatment. My curvature worsened by maybe 5 degrees, but then returned to what it was prior after a few weeks.

Fast forward to now (22 months in), my curvature is about the same - 35 degrees. i finally had an ultrasound done. i had probably seen 10 urologists by that point. And 9/10 had told me they felt a plaque. However, One of them told me they didn't feel anything. Ultrasound showed moderate bilateral fibrosis on the bottom side of the tunica, but no large plaques. My urologist is recommending i see a Rheumatologist, because this might be a inflammatory issue. I went and had all the testing done they recommended -all came back negative for any markers. I have had some funky history of low grade inflammation throughout my life that manifests in weird ways (burning, pain, etc)- but nothing that has ever been diagnosable. I'm also positive its diet/gut related when I have flare ups.
When I told this to the RAs they basically looked at me like I was crazy and said I was fine.

My urologist is recommending plication but has some concern that if we do the procedure, and there are underlying inflammation/fibrotic issues - that the curvature could still continue to worsen.

I'm kind of in limbo and don't know what to do. Curvature still allows for activity, but it is limiting. I'm concerned about getting a plication based on what my urologist is telling me about the fibrosis/inflammation. And the fact that I did not have any type of trauma that caused the curvature - it seemingly just onset for no reason. I do not have any erectile issues. other than the curve itself, the only issue i have is that after activity i will get some soreness. I've had some shortening in length from the curve, but girth has not been affected.

Also, I'm Not sure what steps i should follow as a new member either, please let me know if i forgot to do something!

[LWillisjr]

As a new member, you are doing great. Thanks for the detailed explanation and for providing some details in your signature block.

On the down side, sorry about your condition and that you have joined our little fellowship here. So far it seems you are doing mostly all the right things.

1. Few men can actually relate any trauma to their peyronies. This is due to the fact the trauma could have been 3 months prior before the peyronies actually starts to show visually. You are not alone when you say you are not aware of any trauma that triggered this. But certainly, something must have.

2. You said your congenital curve is downward, is this also true for the Peyronies? You are currently 35 degrees downward? Obviously downward curves are less forgiving than upward. What I mean is that many men can still have intercourse with an upward curve of 30 degrees or so. But downward curves are definitely in the wrong direction.

3. We have several boards on the forum for VED and traction therapy. I would suggest you consider one of these. Some men have had some success, others not. There is no single thing that works for everyone. But I always recommend it to try before taking the jump to surgery. HOWEVER....  I only know of men getting mild improvement in curves using VED or traction devices. That means if someone has a 70-degree curve, and you might only expect MAYBE a 25 degree improvement with VED/traction, then you are still left with a 45-degree curve. In the case of an extreme curvature, I support men who want to forego VED/traction therapy and jump right to surgery.

4. Surgery....  The initial stage of peyronies is called the "acute phase". This is when the peyronies is active and may still be causing further fibrosis. Most GOOD surgeons will wait 12-18 months to make sure you are past this phase and now stabilized. Sounds like you have been stable for a while. Surgery has come a long way in the last 20 years. We have a board on the forum dedicated to surgery for peyronies. There are different techniques that vary by surgeon and what is best for your situation. Plication is one of the less invasive surgical techniques. Depending on where you live, we have a handful of doctors/surgeons we are familiar with and recommend.

Hopefully you will find a lot of help and support here.

Admin

[Mikel7]

Welcome Kangy to the forum! I will concur with what LWillisjr had to say. I will ask you though have you looked into probiotics for any gut related issues?  I also have had some inflammation issues which is related to my gut bacteria getting out of balance,(from eating too much sugar). So my nauropathic Dr has me taking Ortho Molecular Orthobiotic which miraculously has eliminate my bloating and gut/inflammation issues. Also have you been checked for celiac disease? Mikel7

[Kangy]

Appreciate the welcome!

To expand on some of the comments/questions

My congenital curvature and current peyronies curvature is downwards.  

I saw quite a few surgeons and most were ready to cut me open immediately - not until i found the right doctors did they explain the general process and prognosis of peyronies.

I have tried a vaccum device and it was not comfortable - i know its not meant to be, but i was concerned that it might worsen the issue with the amount of discomfort i was having with it.

Im in the D.C. Metro area and am lucky to probably have seen most of the top surgeons for a consult - would highly recommend John Hopkins Urology and Chesapeake Urology group to anyone on the East coast.

As far as naturopathy and supplements, i have seen a few naturopaths in the past. Actually i have an appointment with one next week. i have never been tested for celiac disease. I do know my gut is super out of whack. When i fall off the diet wagon i will get localized and sometimes widespread burning sensations that conventional medicine cant define. Im also taking arginine, coq10, d3 and a few others.

I will look into the probiotics and see i can get tested for Celiac

I'm struggling trying to find any type of doctor to go down the rabbit hole with me to eliminate any possible underlying issues that might be at play. My main concern on surgery is that they do it and the curve continues down the line because of underlying problems. I've been misdiagnosed and had several surgeries in the past, including coming in for peyronies related pain, and being rushed off to have testicular torsion surgery  


 

[FrankPD]

Welcome!

I'm no stranger to downward congenital curves, hasn't been the easiest thing to manage.  I have no change since my diagnosis.  I stay away from tight underwear (boxer briefs).  I loved them but since after my diagnosis I'm terrified they're too snug if I get an erection in them keeping it downward.  My uro and PCP said it doesn't matter but for the reason above, I won't wear them anymore.

Good luck to you.