New guy here... Hello Everyone!

[Greenalien]

Hello everyone... I am a 38 year old male that has been struggling with penile pain for almost 8 years. I was diagnosed with Peyronies Disease 4 years ago. I have always been a very athletic guy and started having sharp pains in my penis during erections when I was in my late twenties; that is when my symptoms began.
Initially the doctors thought I had injured myself in the groin during sports; I could not remember a recent event that would have caused such acute pain; I always wore a cup during higher risk activities for hits to the groin. The pain progressively became worse and I started having issues of tenderness even when flaccid. I had no curvature and didn't really feel a mass (at that time). Fast forward a couple of years and a substantial plaque did develop and the pain has increased. It is now to the point where erections are brutal and ejaculation is tough to achieve due to the pain and tenderness of the area. This has exasperated the swelling of my prostate as I do not release the fluid and the amount of inflammation is quite high. Due to the constant pain, my body tried to compensate by tightening all the pelvic muscles as thought it was protecting me from an imminent threat. I have now been diagnosed with Chronic Male Pelvic Pain Syndrome, Benign Prostatic Hyperplasia and Peyronies Disease.
My GP referred me to a urologist who has tried the following:
Verapamil cream – The skin on my penis did not react well to this cream; I had to apply it four times a day and it caused a burning sensation and my skin became coarse and irritated. The plaque it about an inch below my glans on the top side of my penis. I am not circumcised so there was additional issues when applying the cream. I tried applying it to the foreskin in hopes it would still penetrate down, and when that was unsuccessful and irritated, I tried applying it under the foreskin which had even a worse reaction. My urologist advised me this was not going to be a suitable treatment.
Next, I began a course of Verapamil injections every four weeks directly into the lesion in my penis. These injections are extremely painful, but at least the drug was going into the plaque. The injections caused a lot of bruising, and an incredible amount of swelling for almost a week afterwards. It was worth it because I thought this would be successful. The plaque began degrading, but not smoothly, or evenly. What was once a spherical mass that caused pain, has now become VERY jagged and uneven so any pressure on the top side of my penis is quite painful. It has made even wearing underwear a poor experience. I have had to change from boxer briefs to anatomically correct briefs such as Andrew Christian Almost Naked (I added the brand in case any other men can get relief from using these). Boxers were too loose and allowed my penis to move too much as I walked etc and having too tight of underwear was not an option. Seems like I was in for discomfort no matter was I do now. Anyhow... back to the treatment. The Verapamil injections has caused so much inflammation of the tissue that they have had to stop as it can now actually cause scar tissue if I continue. This treatment has now left me with a jagged mass and no resolution until the inflammation goes down... so it basically made things worse.
Now, I only have the option of using anti-inflammatory cream (prescription strength Voltaren) until I can continue with the shots; it has been 9 months since my last injection. My penis still swells periodically as though I have just had an injection; they believe this is due to the inflammation.
I have tried shockwave on the site which does help with pain reduction, but it has not reduced the size of the mass... in fact, the mass is still increasing in size. The shockwave treatment itself is not pleasant, but it almost numbs the area from over-stimulation so the next day or two is more bearable. It's a good thing to know in case there is a commitment you must go to.
I have insurance coverage for most of my treatments here in Canada... as well as many of the paramedical treatments such as massage and Graston and physio for the Male Pelvic Floor condition. I do still spend about $500 a month on treatments though from a pain reduction perspective. Acupuncture has also proved to be good at reducing the sharpness of the pain, but again it is only temporary.
I am happily married; my wife has been amazing but it has significantly impacted our sex life. She is always scared of hurting me and she can see I am in pain during intercourse. Oral is no longer an option because she is too afraid to hurt me.
I do see a psychiatrist to help me deal with the uncertainty, frustration, pain and the impact is has had on my life. I stay home mostly and walk around with no pants as much as possible. My close friends know what is going on, but I do not feel comfortable telling everyone. I no longer take part in physical activities.
I hit a breaking point in spring. I wake up when I get nocturnal erections due to the pain, if I flip onto my stomach when I sleep, I get woken up due to the pain, and even walking in the mall can be excruciating depending on the inflammation. Because the mass is on the top of my penis, I can't tuck my penis downward in my underwear or it rubs on everything... having it upwards rubs on my pubic bone. The doctors gives me pain medication, but I cannot drive when using it and due to the high risk nature of my job, they will not allow me to work medicated so I am now off work and my career is on hold. I tried to take my life in May of this year, but was taken care of by ambulance and hospital and am making a recovery. I work closely with my psychiatrist to ensure I do not get that low again.
I hope this introductory is of help to someone.... And I appreciate you taking the time to read it. It has taken me a long time to decide to reach out to other men and chat. Reading your other posts gave me the strength to write this, so for that I thank all you men who had the bravery to do it before me!

[Jonbinspain]

It's hard to know where to start!  

Firstly, read all you can on this site. There really is more accumulated knowledge about this disease here than is possessed by 99% of Urologists.

I would also recommend that you find another Urologist. Have you had an ultrascan done to establish the extent of the plaque, and if there is calcification? Also, what additional damage has been done to your penis, from what you describe.

[Greenalien]

Hi Jonbinspain,
Thanks for your message. Luckily I have been able to get a second opinion, but its not for a few more months still so I am stuck waiting until then. I have been asking for imaging and haven't gotten any. My doc asks why he should send me when he knows what is in there... It's very frustrating. I can't wait for this second opinion. I don't believe he is being negligent... he seems like a very nice man and his intentions have been good with everything we have tried, but I do agree it is time for new opinions. Status quo is horrible.
I am not 100% sure what all the reasoning is, but he has always said that surgery is not a viable option for me. It will be interesting to read more about that and talk with people here. Has anyone else been advised that?
Thanks to this forum, I have tried new things. My penis has now started to curve due to the lesion when erect; he calls it a dorsal curve. I have purchased a Phallosan and have been trying it. It is still quite painful due to the jagged plaque but I just wear it as long as possible.
Thanks again and this site has some amazing content... I am glad I finally signed up and got engaged. It makes me feel like I am doing something which helps put immensely from a mental stance.  

[LWillisjr]

Welcome, but sorry you had to join us. Hope you find the support you need here.

[Adam]

Hi Greenalien, sorry that you have to endure so much. I just want to tell you, that i have pain singe 5 years and been on pentox nearly all the time. Later i added propolis and some slices of ginger and curcuma to my daily intake. Then i started doing some exercises to reduce inflammation even further but my pain stayed constant. Perhaps half a year after starting heattreatment with infraredlight 150 Watt at 30 cm distance and two weekly 20-30 minute-sessions, my pain and discomfort has improved significantly. But you have to be carefull to not burn yourself. Always listen to your body. Hope it helps. Wish you a good recovery and be kind to your wonderful wife. With such a wife you have hit the jackpott.