Hello,
51 yo, married, 2 kids
I first noticed curvature (10-15 degrees) in my penis in Dec 2022/Jan 2023. I have had moderately high blood pressure for many years. After turning 50 last year I decided it was time to get it under control. Started on 50mg Losartan, brought my BP down a bit but not into recommended range. Doc added hydrochlorothiazide, which did lower my bp but also made me feel like crap and decreased my erection strength. I believe intercourse with my wife and/or masturbation while softer than desired may have been what started my damage. Also, our go to position over 20 years together has been her on top, so there is a good chance we damaged that way, however I can't pinpoint any specific occurrence. We are still able to have intercourse and I am able to achieve orgasm (which happens much quicker than before). Guess I should be thankful for that.
Stopped the HCTZ med, erections still soft and difficult to maintain. Referred to urologist. He confirmed ED and Peyronies based on sympotoms and physical exam. Deposits on top and right side of penis. He found it interesting that my curvature is to the left based on the location of the deposits. He ran blood tests to include a Testosterone study. Found T to be low (<200). Prescribed T replacement therapy which will take a bit to get going due to insurance. Also recommending Gainswave shockwave treatment along with PRP shots into the penis (!!!) along with a vacuum pump and a bunch of supplements. I came out of our 2nd meeting overwhelmed and not sure what to do. Now reading posts here it sounds as if the shockwave and PRP has limited success. Need to do more research on these options. BTW, $9000 for those treatments. I feel like this is an aggressive course of treatment. His thoughts are that it is better to treat multi-modally while in the acute phase vs taking a wait and see approach as I amd more prone to do.
As you may have guessed from my signature, I am a regular cyclist (mostly offroad) and wonder if lots of hours on the bike saddle also contributed to my ED.
Sorry for the long post. I think maybe I just I needed to type this all out and get it off my chest.
Looking forward to learning more on the forums here!
Impossible to know for us on the outside what might have caused it but as you said yourself, probably from repeated microtrauma due to sex with softer erections. Thinking about what caused it will be of no help anyways, you can only look forward now and start treatment that will hopefully halt progression.
Your doc suggested a pump, good idea, try one and be gentle, also please, on the behalf of your wallet I can say do not go ahead with the shockwave scam.
Welcome 321cyclist to the forum. The first thing you should do is to fill out your signature line -->Signature Line (https://www.peyroniesforum.net/index.php/topic,10819.0.html) . Then you need to download and study our survival guide -->Survival Guide (https://www.peyroniesforum.net/index.php/topic,3180.0.html).
Peyronies disease could very well be brought on by low testosterone as well as having a weak erection causing an injury. I am assuming that your testosterone test was just a total one which is low but of no value. You need the free testosterone test to give you a real picture of what is going on . I could say that yes you are a candidate for replacement therapy. I have personal experience with that as I have been on full replacement for 19 years. Getting an educated and experience Dr to manage it for you is another story.
The gainswave procedure is a total waste of money and time. You can search the forum and read about others experience with it. I would suggest that you get some correct measurements of your penis for a baseline. Then you should look into traction therapy with either the Penimaster Pro or the Restorex. This can help prevent any further length loss and curvature. You can also read up on VED therapy as it has it's benefits.
I am also on Losartan and it works for me, you just may need a little more time with it to work. Yes riding on a bike can cause some erectile dysfunction but it is not always for everyone. Do you have a special cutout seat? Also did your urologist suggest Cialis? Cialis would also help with lowering your high blood pressure.
Peyronies disease is mysterious and affects each man differently. You need to be careful with sex and masturbation as this can make things worse. I know some urologists say that you should still engage in sex, but just be careful.
One thing you need to adopt is the mindset that this is a marathon and not a sprint. It takes time to treat and combat this disease. Don't try and obsess about how it happened to you just know that here you have some community and can educate yourself better than a lot of Dr's. Yes seriously! Welcome
Mikel7 :)
cyclist here also. Not sure that has anything to do with it. I've entered into a program similar to what you suggested and am 6 sessions into it with all the shots prp...pentox..SW..etc. Couldn't do cialis...made my legs ache so bad and I recently had to test going off of pentox as I get crazy lower abdomen pain that drives me nuts...it went away for the most part after 10 days. I've resorted to more traction with the restorex...I find the pump gives me lots of flaccid pain for days even though I'm super careful and use really low vacuum. I've hourglassed on the right side and the top just about 1" back from the tip....Sort of takes getting used to looking at it. I'm still very much in the acute stage.
Sonic, Mikel7 and Zoned999 - thank you for welcoming me to the forum. And good advice to not worry so much about the cause and get on with dealing with it. Still having sex with my wife about once a week, but have to admit the desire is not there like it used to be due to nervousness about causing further damage. No masturbation any longer. Mike - I did have a full Testosterone week including free, bioavailable over 4 test dates - still waiting to start replacement therapy once insurance approves it. Doc is recommending shots to start and then pellet placement ongoing.
Zoned999 - have you noticed any improvement from the SW amd PRP? I am skeptical on those based what I am reading here.
Thanks again guys for the welcome, info and encouragement!
Mike
My apologies for the late reply. In terms of injections I have done 3 sessions of Prp, and 2 pentox, this has all been over the course of basically 12 weeks. Add in the SW for 5 sessions. Things I've noticed! The SW doesn't hurt me..I can barely feel it and I am told that this is because my plaque is soft. I'm super early in this with first symptoms late Feb 2023. I was treating it within 4 weeks. I was told that guys with hardened plaques experience a lot of pain during the actual SW amd some can barely stand it. The injections for me are confusing, I'm not really sure what to think of them! I want to be positive but then again my plaque has trippled in size and is basically like sheep horns right behind the glans both sides. One thing to note however is that I have lost no length and have no curve but the mild to moderate hourglassing, right side and top have shown to be a challenge. The doctor says this would have been way worse if I hadn't gotten treatment right away and potentially would have had the glans bend up to a varying degree. The flaccid pain has gotten a bit better for sure unless I have sex and am not super careful. I am still in alot of erect pain and have a crazy tightening feeling when erect...next day I pay the price if I mess around with it..sex is almost a no go right now...Glad my wife can bare with me....Doctor told me we need to do more PRp, maybe 2 or 3 mor over then next few months...the idea being to essentially guide me through the acute phase with the least loss of length and curvature. I don't know? he says the pain will go away. I'm trusting professionals but I do also wonder if I'm doing the right thing? It's almost as if it's dammed if you do dammed if you don't. Hope this helps and please feel free to ask me any questions.
Hello, I actually just posted this:
https://www.peyroniesforum.net/index.php/topic,19620.0.html
I will also ask you about your saddle. Are you using a split saddle such as a Selle SMP Glider? For many years I rode with an old-fashioned saddle and ignored the fact that my whole crotch would be numb after a long ride. I just thought that was normal. So if you are still riding with a traditional saddle the first thing I would recommend is that you switch to a good split saddle that takes the pressure off your perineum, prostate, and the base of the penis.
PK