Am I getting peyronies?

[tarheelgwb]

So i have been reading posts about peyronies. i think i have started down that road. my penis has always been straight, no curves bendsm turns etc, as my wife concurs. but in the last 2 months i am noticing a sight upward bend about at the circumcision line. i would say about 15-20 degrees.
i am on trimix, 30/4/7.5 (pap, phen, alpros). i inject about 20 units. sometime a little more or less. i started injecting after RP around May 2015, usually 2 times per week but then up to 3-4 times some weeks. i have taking a few pictures to compare the bend over the last 3 weeks, primarily to show my doctor if she wants to see them. i see her in November 2017.

i also pump daily. i started pumping after surgery in 2015, twice a day for a year then once per day then 4 times per week. since noticing the upward bend i am back to daily now. no pain in intercourse. just concerned that it may worsen.

so question, anyone with this situation, did your bend start at a small angle and get worse or what? will i see a worsening? what angle is considered true peyronies?
thanks

[geophd]

If you have noticed a new curvature in your penis then by definition you have developed peyronie's. Can you feel a palpable nodule of plaque/fibrosis/scar tissue anywhere in your penis when it is flaccid? That is also the hallmark of peyronie's. There really are no other reasonable alternatives, especially considering you are injecting, a typical cause of peyronie's. This condition is certainly "self-diagnosable" so your instinct is likely reliable here. It is still fairly early to determine how severe your peyronie's might get. It could be mild <30 degrees or moderate/severe > 30 degrees, moderate to severe cases generally cause discomfort during sex and could benefit from Xiaflex/VED/tractions but these are imperfect therapies. The condition will progress for 12-18 months. Continuing to inject yourself WILL make this worse... You're in a tough spot. However, after thorough research, I'm a PhD student in science so it's my job, it seems your best solution is a penile implant. This will solve your ED and curvature. You should pursue a high-volume penile implant surgeon and do not let local or infrequent implanters do the surgery. Dr. Eid and Kramer are ideal. Please watch this video and review the IMPLANTS forum of FrankTalk:

https://www.youtube.com/watch?v=sWl7-pPClR8

[bldoink]

I don't know if you're getting peyronies or not. Nor do I claim to be an expert on anything despite having done some research. I wouldn't worry too much. You'll be seeing your doctor soon so then you can decide to worry or not. My dick has always been arched and I like it that way.

I did find an article that you may find interesting and relates to the issue although it is a bit dated:
Current perspectives on intracavernosal pharmacotherapy for erectile dysfunction in the International Journal of Impotence Research (2000) 12, Suppl 4

I posted a direct link in a previous post but I saved the file and don't recall the link off hand. It's on this forum somewhere. Reading it, it supports one of my previous doctors comments about trying Tri-mix when I was doing well on the Mono-mix. She advised not adding extra drugs to complicate things if the one was working.

The article relates, among many other things, this about papaverine, the primary ingredient of many Tri-mix formulas: Papaverine was originally sold as a stand alone mono-mix but this treatment has been largely discontinued due to causing fibrosis.

("Fibrotic alterations were seen in 5 ± 30% of patients with an average of 5.7% in 15 retrospective studies." and "In animal studies, papaverine resulted in the highest fibrosis-rate among all the investigated vasoactive drugs.")

It also related that along with being the most effective, Alprostadil has proven less destructive:

("In the two major trials with both alprostadil-preparations, penile fibrotic alterations were encountered in 7.5 ± 11.7% of patients during the course of the 4 ± 5 y of long-term follow-up.45,46 The prevailing majority of fibrotic alterations were small nodules which did not interfere with erectile function or vaginal penetration (Table 4). Between 33 and 47% of these penile fibroses healed spontaneously, suggesting that the incidence of persistent penile fibroses in patients on long-term self-injection therapy is between 5 and 7%.")

Interestingly it also related that while pain with alprostadil is an issue it's incidence decreases over time (that's my very abbreviated interpretation) Here:

("Typical side-effects with alprostadil self-injection
therapy are the occurrence of penile pain in 8 ± 52%,
however, with long-term follow-up and individual
dose adjustment, pain-rates decreased to 1 ± 11%")

I hope that information is of interest. I wonder if the possibility of a Tri-mix with less papaverine is worth discussing with your doctor.

I'm sure as hell no expert but I wouldn't get too worried yet. Maybe an implant is in your future and maybe not. I'll stick with my alprostadil mono-mix for now.

[dg_moore]

The curvature you describe sounds like what happened to me. It was never "officially" diagnosed as Peyronies, but my implant and some modeling by Dr. Kramer straightened it out completely.

[NeedleD]

Consult with a professional.

[bldoink]

Consult with a professional.

Well yeah, that's number one.

[tarheelgwb]

thanks to everyone for your replies. to answer one question, i don't feel any nodules or anything at all. maybe i don't know what to feel for? anyway, I too am thinking of reducing the pap to 20 from 30. i am really wanting to stop injections period. good new is last night, after taking two (Mexican generic) Viagra, we were able to have penetrable sex. Had to do it quickly though, but success is good. i told my wife i want to not use the injections at all if possible.

when i see the Doc in late Nov, i will discuss with her.

PS an implant is on my mind at some point, but i doubt my current employer provided medical insurance thru BCBS will cover it. may have to wait for medicare in 5 yrs.

thanks

[geophd]

You should certainly consult with your doctor. Although, be aware that as far as urologists go the overwhelming, vast majority, almost every single one of them (you get the point), don't have a specialty or familiarity with treating and diagnosing Peyronie's disease. Your local urologist will likely try to palpate (feel) any fibrosis while flaccid and look at a picture of your erection to see curvature or hour glassing . If you have a new curve and/or palpable fibrosis they will consider that Peyronie's. I'm not a doctor, well I guess I'm 8 months away from my PhD so I almost am, but you can take that to the bank. A more astute urologist will do a doppler ultrasound of your flaccid penis to detect the location and size of the fibrosis. This will not, however, change the clinical presentation and diagnosis of Peyronie's based on new curvature and/or palpable fibrosis. I've been to 4 urologists, Dr. Curhan, Lue, Gelbard, Rafjer.... I gain nothing from anyone thinking I'm an expert, I just bring with me my experience, and when I see someone that my experience applies directly to I try to help.

Unfortunately, the treatments you might do for Peyronie's will be useless if you continue to inject, and treatments are often useless regardless of injection. Peyronie's sucks. Early implantation would avoid excessive fibrosis during dilation and surgery.

In reviewing BCBS coverage and many other coverages I see that depending on your plan it will cover penile prostheses. It has to be medically necessary, such that pills/injections are ineffective or unsatisfactory, that is certainly the case for you. All you need is a plan that covers out patient surgery, there may be a certain cost to you.

Read this:

http://www.newyorkurologyspecialists.co ... -new-york/

Good luck, and please let us know the verdict from your appointment with the doctor (general practitioner/urologist??)

[tarheelgwb]

thanks geophd. good info. i will post a reply after my 11/29 uro appt.

[qcswral]

After 2 years of injections ( 3 years ago now) I noticed a small nodule or lump on the left side of my penis..I did the typical Google thing and freaked out...but I managed to get in with a URO who's speciality was peyronies...First off there is a lot of controversy whether or not developing fibrosis is actually Peyronies...Peyronies is the formation of actual fibrotic tissue developing plague...anyway some basic facts...a great deal of Peyronies cases self resolve in 1-2 years time..Early treatment is key. My Doc prescribed Pentox 400mgs BID along with a few supplements (L-Argenine etc) and daily pumping. I also was advised to stop injecting until further notice..Second..there is a Peyronies site very similar to this site..join it and begin talking to people who have the disease...A lot of really good info on that site. I was fortunate, my fibrosis resolved after 9 mis-1year..but I was told to limit the injections to once a week..That was 3 years ago and all is still well. I do continue to pump 3-4 times per week for 10-15min per session. Pumping is very important BUT DO NOT OVER DO IT!!..The pumping delivers fresh oxygenated blood into the penis which will promote healing..THe Pentox is a blood thinner which also helps in healing or breaking up the scar tissue..Arm yourself with as much info as possible, see a URO who specializes in Peyronies and follow the treatment to a "T"....I wish you the best...but early treatment is key to a successful resolution to the problem..