Peyronies Diagnosis Confirmed Today

[Jackfromwa]

Thanks to Hawk and the other admins who created and maintain the space. I've researched many places regarding ED and Peyronies and this forum has been far and away the best.

My Peyronies diagnosis was confirmed today at the University of Washington Men's Health Center. I am a 60-yearold male who has struggled with ED for more than 40 years.

When I first couldn't get hard enough for vaginal penetration in my late teens unless really drunk, I thought it was because of my fundamentalist religious upbringing. I ignored the fact that I was more sexually stimulated thinking about males than females. I have been clean and sober more than 33 years now, but in my addiction, I assumed my ED was because of my alcohol and chemical use.

When I got clean at 27, I returned to the religion of my youth for a few years until I realized I actually was gay and then I didn't believe God didn't want me to enjoy sex with another consenting person. AIDS was happening, and I avoided sex. When masturbating I achieved 50 – 70% erection. I was introduced to tri-mix but after doing it four or five times didn't continue. It seemed too complicated for casual sex.

I had little to no sex for ten years. I have never liked doing things I'm not good at and I didn't trust my dick to be erect. In my late 30's I entered am almost 10-year relationship. Our sex life was mediocre and I never attempted penetrative sex even though he wanted to. I told him I had ED and I couldn't. After we separated, I adopted my then 10-year-old son from foster care. He is 25 now and I have a 4-year-old granddaughter �

During those years as a working, single dad, I didn't have random sex and I didn't really miss having a mate. When he graduated high school, I started dating a little. Cialis and Levitra didn't work. Viagra did but the headaches and seeing blue were intense. As bad as a college hangover. Usually sex wasn't worth that price, though sometimes I was horny and paid it.

When COVID started I realized that I would give myself good grades in most of my life. I'm a good friend, a community leader, a successful business person, a person in long-term substance use recovery and my friends, siblings and parents love, respect and appreciate me. But my sex life wasn't and had never been good. I would give it a C. I met a beautiful man in his 20's and learned to appreciate sex in a way I never had.

I started tri-mix again and enjoyed being hard as a rock, sometimes too hard. One day a small pea sized lump appeared in the shaft of my penis and I went to my urologist. "It's probably nothing to worry about," he said. "But in case it's cancer we will do a cystoscopy." I had that procedure.

"Should I get injecting?" I asked.

"It's up to you, but I wouldn't," he shrugged.

I decided to try one last ED drug, and even though it was quite expensive discovered that Stendra (Avanafil) worked well for me. It has as effective with Viagra with no headaches. I discontinued all injections in May of 2022. I probably injected 150 times in the prior 18 months.

In October, 2022 I began a monogamous relationship with a different young man who I am with today. I noticed that the small pea in my penis has grown and know there was something that felt like a washer. There were definitely masses growing in my penis. In August, I woke up one morning and the end of my penis was constricted and the girth just before the head of my penis was about 25% smaller than my shaft. I'm not that large (I measure 6.25" from pubic bone to tip) and my length seemed shorter. More concerning was a prominent bend to the left in the last 1.5" of my penis. I've determined that is between a 30- and 40-degree bend.

That is where I am now. Peyronies with a 30-to-40-degree bend. It doesn't hurt much and I can be sexually active. Because I have done a lot of personal growth work, I'm working reasonably well through the depression and anxiety of feeling disfigured.

I contacted Dr. Eid's office as I believe my best long-term solution is an implant. Because I don't have Medicare, and every medical policy I seem able to get excluded sexual health, the cost is about $33,000 plus travel. I am fortunate that I can afford it, but it would be at the expense of other things.

I have a video appointment with Dr. Trosk in Utah and I am considering injections with him. He is in network and if we can stop this from progressing, I think it reasonable to keep using Stendra until it quits working, at which time I will get an implant.

I did purchase a RestoreX after reading about it on this forum and though I don't like it, I am willing to spend some time in penile traction.

I am open to any suggestions and really appreciate the generosity of the many men sharing their experience. In a strange way, knowing I am not going through this alone helps. I am committed to enjoying a healthy sex life the next few decades and I know I don't need to let ED or Peyronies prevent that. I wish this didn't happen to any of us, but I accept that this is mine to deal with and I'm doing what I can to navigate it.

If you read this far, thanks for reading.
 

[Jackfromwa]

I realized I to share what the University of Washington urologist recommended. She commented that my plaque is significant, about an 8 out of 10 for Peyronies and that my curve is significantly less than she would expect from that much plaque.

She recommended taking pentoxifylline, which she prescribed, and doing at least 150 minutes a week of cardiovascular exercise. She also encouraged making sure I keep taking Stendra to have erections and to use my RestoreX. She was encouraging in that she said she believed we could keep me sexually functioning and that she wants to do an ultrasound and a test to see blood flow in three months. She had done penile implants and injections herself and I know that Dr. Walsh here is competent, though I'm pretty sold on going to Dr. Eid if/when I do an implant.

I still think I will move forward with Dr. Trost in Orem, though she said with my plaque/calcification that Xiaflex may not be as effective as it could be, but there was no long-term downside in her opinion. She also said my Peyronies was likely caused by trauma to my penis from the tri-mix injections. It's frustrating that my urologist in the small town I lived in prescribed the injections, and when I developed scar tissue or plaque, he said that the injections can't cause Peyronies. I think he is wrong.

I'm both depressed and encouraged and I know that I can always get an implant if things get worse or other options get too difficult or unproductive. I'm going to drive home now, crank up the music and take a break from worrying about my penis.
 

[Mikel7]

Welcome Jackfromwa to the forum and thank you for filling out your signature line. Please download and read our survival guide -->Survival Guide .

I think that you need to look into VED therapy and traction. Both of these can slow down the progression of loss of size and girth. Pentox is still up for voting on if it actually helps or not. You can try for yourself. Heat therapy does help with reducing pain and facilitating healing.

I would still say that you should keep your appointment with Dr Trost as you could get some clear direction from him. Also if Xiaflex is indicated he is the one to perform it. His success rate with it is extremely high as he has his own protocol with this drug.

Remember that peyronies is a healing disorder of our body and it affects the healing in our penises. Have you done some preliminary measurements of your penis? This can help you in the long run for future reference.

Worry does a lot of damage to your sexual health and your penis. It is best to adopt a marathon mentality when approaching a treatment plan. This is not a sprint but rather a marathon. Be at peace and know that you are among a great bunch of men who care and do really understand your pain and anguish! Just knowing that others have been down the road you are on is comforting.  Read the forum and you will gain more insight into peyronies as others also respond to your questions.

Mikel7