Hi All...I am 58 y/0 male.  About 18 months ago I noticed a hardening mass halfway up the shaft of my penis.  Some few months after that I started to have some pain and then started to have an hourglass shape.  The pain went away fairly fast and in the past few months I have developed an upward curvature I am guessing maybe 45 degree.  I saw a physicians assistant who told me there was little to be done.  The meds have not been proven to be very effective and surgery can result in reduction of length and total erectile dysfunction.  I already have erectile dysfunction and with viagra or cialis I can get erect but it is an embarrasing shape.  I loose and erection with condoms and am HIV positive.  So I only have intercourse with poz guys and honestly I don't even know if I am capable of that anymore because the tip above the curvature is flacid...I also show shrinkage when flacid.

I am trying to get a referral to a Urologist who I have seen in the past with kidney stones, a direct result from HIV meds.  It is causing some low self esteem and my confidence/personality around sexual issues is shutting down.  Well that is a lot to type and share but this seems to be an appropriate place for it and don't know where else to turn at this point...

Hi JWS,
The consensus opinion on the forum seems to be that the treatment should begin as early as possible when you first notice signs such plaques, pain or curvature, which are the most usual symptoms of Peyronies Disease. It's unfortunate that the doctor you saw said little could be done but this is a common enough response that many of us have heard including myself at the outset.

The erectile dysfunction you mention is fairly common with Peyronies but Cialis is actually one of the more commonly used meds to try and improve circulation, which is important, while studies suggest it is useful in reducing the scarred plaque found in Peyronies.

The main weapon used by most men here to combat Peyronies is a product called Pentox, which is relatively cheap and most urologists with any good understanding of Peyronies will usually be willing to prescribe this, however with the HIV you mentioned you would obviously need to check first if this is compatible with any other medicines you are taking.

Surgery is generally never considered until at least 18 months when the condition tends to stabilise and I'm not there yet so I can't offer any real insight in that regard but I would suggest you spend some time on the forum to get informed about the various options and see what can be done without resorting to an operation.

Many of us suffer from low self esteem and loss of confidence with Peyronies and it doesn't matter whether you are young or old, rich or poor or whatever. Peyronies can affect any man regardless of circumstances and nobody here wakes up in the morning thinking how wonderful it is to have Peyronies but some have managed to find a successful resolution given time and some appropriate treatment.

Good luck

Ashtown

Hi JWS,

Welcome to the forum and I'm sorry you have to deal with this disease. I second ashtown in that pentox is one of the preferred prescription drugs for treatment, along with Cialis and Viagra. All of these drugs have been found effective in reducing inflammation and reducing the growth of scar tissue. Of course, you would need to confirm with your primary doctor about any interactions with HIV meds.

I'm a straight married guy here so I say can't I know much about the gay community, but I do know this disease is a real psychological burden to bear. I would guess though, that if your potential partners are the same age that they too are dealing with some aspect of their bodies not being 100% what they once were. When I'm feeling down about this disease, I try to keep in mind that everyone is dealing with some problem or another. Coming to terms with the changes Peyronie's brings to us below the belt is part of the healing process. Good luck and feel free to ask any other questions.

Regards,

Skjaldborg

Thanks to each of you who have replied.  I was really feeling alone and felt I may have shared more information than was necessary and got no response.  I appreciate each of your comments and am still awaiting a referral to a urologist.  I appreciate the advice and will read more about treatment so I can discuss that with him when I get an appointment.

I appreciate the acknowledgement of psychological effects of this issue.  I will be back here with more comment after reading more and seeing my doctor.  Thanks again.

Hi JWS,
I think you'll find all kinds of situations and experiences highlighted on the forum but pretty much everybody here has Peyronies and honesty is encouraged as long as it's constructive and helpful. We all go through difficult times with this rotten condition but this forum is a great resource for mutual support.

In essence you are dealing with a scar that is having some difficulty healing but because of where it is and the way it affects our lives men find it hard to deal with both physically and psychologically. Good luck with the doctor and in the meanwhile try to learn as much as you can about possible treatments.

Ashtown

JWS,
You didn't mention if you were experiencing some ED issues prior to the Peyronies. Some believe that Peyronies can cause ED. But it seems most of the time the ED occurs first. And weaker erections makes us more susceptible to trauma which can then trigger Peyronies.

Also they response you got from your PA is far too common here. It seems to be the standard textbook training the general urologists are provided. But the good news is that there are a handful who have specialized in treating Peyronies Disease. There are therapies you can try and these are outlined on this forum in the various boards. Look up traction, VED, PAV cocktail, Pentox, etc.

There isn't one thing that works for everyone. But there certainly things you can try. These have proved to help various guys on the forum to some degree.

Surgery is only a last result, and I would say only for extreme cases. There are of course risks with surgery, and is why I would only ever recommend a handful of specialists in the U.S. to go to for this. These doctors have a pretty good track record. There are several on the forum who have had surgery and are very pleased with the outcome (including myself).

Sorry you are here among us, but welcome to the forum. You are among friends who are willing to help, willing to answer questions, and to answer any questions you might have.

Thanks for your reply Lwilliljr.  It is very comforting to be familiarizing myself with this board which I have been doing the last couple evenings and to get feedback from my posts.  To answer your question, Yes I have had ED issues to some degree most of my life.  Viagra has made a huge difference in my sex life in the past.

I did finally get the referral from my Primary Physician (after three weeks of playing middle man with nurses) to see a URO but the first appointment available is July 1. I expressed my concern that the condition may worsen putting it off that long and the receptionist offered to message the URO to see if he might choose to squeeze me in sooner.  Since I have seen him medically in the past for kidney stones and I have seen him in the past couple years once or twice in social situations I am hoping he will find room for me in his schedule prior to July 1.  One more thing about the URO:  I looked at his bio on the net and his specialty is Oncology.  I am hoping he will either know or refer me to someone who is experienced in the field of peyronies.

I have an appointment with my Primary Physician on the 26th of this month and I will do research to find what form is necessary to have my insurance (Medicare and supplemental) help pay for the VED.  I think as far as Pentox or PAV; I will consult with the Primary Physician but gut feeling is she will defer to the URO since they are his specialty???  I have a call into the Pharmacy to find out if there are any drug interaction issues with Pentox and the current meds I am on.  I will read the posts about VED right now.

Thanks again!!!

Something to be cautious of. Many urologists are schooled on Peyronies as part of their training. So thye "think" they know what to do. Unfortunately most are taught that there is no cure and to wait and see if it goes away. Most urologist deal with issues of the urinary system and cancer. Because they get more patients for these type issues. Not saying anything bad about your doctors, just don't be surprised if they aren't too keen to refer you to anyone.

As far as referrals... we all too often think that a referral is necessary when in fact it is not. In my case I looked up doctor Levine and verified that he was in my "preferred list" from an insurance perspective. I called the office difectly and had an appointment within 6 weeks.

Just don't get bogged down in the referral process and don't get discourage when your urologist says "There is nothing proven medically, so just wait and come back and see me in 6 months".

My first urologist told me "There is nothing that can be done, you'll learn to live with it"!!