Not exactly new, but first time introducing myself.

[NYC]

Hello there fellow Peyronie's sufferers,

I am a 43 year old guy who resides in Lower Manhattan, I discovered that I had Peyronie's about a year ago. I guess the first signal that I had the condition was discomfort during sex with my girlfriend, she was the first woman I'd been with that had an IUD and I attributed the pain to abrading against this device. My penis was about 7 1/2 - 8 inches before I was stricken with Peyronies Disease and is now significantly shorter, but more about that later. After about six months of having a mild tingling sensation in my head and shaft after intercourse and basically ignoring the situation (I've led a very active sex life with multiple partners) that I just thought was regular wear and tear from sex, I woke up one morning and my penis was numb from about one third of the way down the shaft to the tip of my glans. This scared me quite a bit and my response was to attempt to masturbate to see it maybe my penis had "fallen asleep" like a foot or leg does after receiving a poor blood supply. In retrospect this was an incredibly stupid thing to do and I believe it was the departure point for the scarring of my tissue. A few weeks later I discovered a hard growth inside my shaft, it was small and did not affect my size but it scared me and made me think I may have a cancerous growth so I finally built up the courage to talk to my GP. He took one look at my penis and told me he suspected Peyronies Disease and referred me to a urologist. I began reading up on the disease, joined this society, watched the videos posted by people claiming to have cured themselves, etc...

When I went to the first urologist he made me lay down, examined me and said, you have Peyronies Disease, come back in six months, there is no treatment available. Needless to say, I was very unhappy with this unsympathetic man and asked my doctor for a second referral. The next doctor I saw was a much nicer and more compassionate man but still had no real advice except to take Ibuprophen and Vitamin E daily, which I did do, diligently. I still felt that I could receive better assistance and began seeking a doctor who was more familiar with Peyronies Disease and ended up getting an appointment with Dr. Mulhall at Sloan Kettering. I went to my appointment, got examined by the doctor and his assistant, was asked to return to have tests run to determine the degree of my curvature (which was unnecessary as my scar is balanced on both sides and I have barely any curve), I was also told to order a stretching device from a dealer who's card he gave me personally. He also told me not to pursue any enzyme or vitamin based therapies as they absolutely did not work. Then he told me he wanted to begin a series of injections (Neprinol I think), needless to say something seemed a little pushy and off during my visit. When I got home I looked up reports on Dr. Mulhall here on the forum and discovered more than a few patients of his that felt he was not very helpful. I called the number he gave me to order the stretching device and received no less than five calls in less than twenty-four hours pushing me to order said device at about $400.00. After all this I decided I did not trust this doctor and I was being scammed out of money, the situation frightened me and I decided to return to my earlier urologist and fight this thing based on the knowledge I could amass through this forum.

My initial bout of Peyronies Disease reduced my length about a half inch and caused a slight bend to the left. I was still having a healthy sex life and was determined to beat this terrible, distracting and depressing disease. About three months ago I underwent what I could call a secondary attack of Peyronies Disease, which shrank my penis about another inch, choking off the area between my circumcision scar and my head and "hourglassing" my penis. In the interim I have been taking Nattokinase, Serrapeptase, Acetyl-Carnitine, and Vitamin E. I took Pentox for three days and developed a respiratory condition that gave me horrible coughing fits and almost killed me (I couldn't inhale for almost two minutes due to my throat closing up) and sent me to the ER during Hurricane Sandy's blackout days. I'm not 100% sure if the pentox caused the condition but I am now too scared to try it again as I might have a sensitivity to the drug. I have used the DMSO/Vitamin E rub advised on one web video which has caused me to smell like garlic and has made my girlfriend refuse to come near me.

In the past week I think my penis has gotten even shorter, it seems to be half of the size it once was, I don't know how much of this is psychological and how much is real but I am currently walking around completely obsessed with this disease, I waver between thoughts of becoming super healthy, working out constantly and beating this thing and contemplating suicide. I am awaiting the release of Xiaflex like it's the next Star Wars movie or something, although there are some concerns about the treatment's efficacy. My love life is in a shambles, I am afraid to touch my girlfriend, although she knows about my condition she has done almost no research to try and help me and also basically refuses to initiate intimate contact. She tells me she loves me and isn't going anywhere but I am insecure about the possibility of her having an affair or just simply moving out. I have a pre-existing predilection towards depression as well as other auto-immune conditions (psoriasis & vertigo). The past week or so has been incredibly challenging and scary. I feel like I am on a lifelong roller coaster ride and I will never be my regular self again.

I would like to thank everyone for giving me the opportunity to vent, for what it's worth. I guess one thing that might help me deal with this situation would be direct contact from other Peyronies Disease sufferers. I could use a friend who has Peyronies Disease to talk to and of course to listen to as well. I don't know what the future holds, I am guardedly optimistic that I can recover some of my old self but I have recently come to the conclusion that I can't continue to do it alone. I hope someone out there who has had the condition longer than I can give me some guidance on how to navigate my life with Peyronies Disease.

Regards

NYC

[LWillisjr]

Since you registerd in July of last year, I hope by now you know that you have many friends here who share a common disease with you. I woiuld also hope that you would have read all the benefits of using traction or a VED. In earlier posts you stated that your were already taking pentox and some other supplements.

I don't know Mulhall's motives but I think his advice on using traction was solid. And you don't have to buy one through the company he recommended. But there are several manufacturers of such devices, And I think I would have been using one if I was concerned about losing any additional length.

Les

[NYC]

I have a VED, not sure how often and how long to use it. Concerned about causing further damage as well.

[betseyagopian]

I don't want to play Captain Obvious, but I think It's clear you should seek another urologist who you can trust and also, some psychological help. I hope you dont take this comments as an offense, but if you ever have a thought about commiting suicide, I really think you need someone to help you out with this. Being 33 years old and having this disease myself, I know it can take its toll on you. But I never went that far like you said. Regarding the VED, I think you need to see an urologist so you can ask him about using the VED in a proper way and without the fear of making your condition worse.  

As always, sorry If my english is not that good. I really hope you can beat this and move foward!

[NYC]

I'm not offended, as I stated, I've got a pre-existing depression issue and I am in weekly therapy, some days are better or worse than others, and the Peyronies Disease does sometimes reinforce my sense of despair but I am not actually planning on killing myself. If anyone can recommend a good Peyronies Disease urologist in NYC I will make an appointment asap.

[james1947]

NYC

You may find urologists near you at:
https://www.peyroniesforum.net/index.php/board,37.0.html
You may find a lot of information about VED and protocols used with success by other forum members at:
Vacuum Erection Devices (VEDs) for Peyronie's Disease - PDS - Peyronies Society Forums

Welcome to the forum
James

[Caesar]

Hi NYC, I also welcome you to this band of brothers.

Like you do, I also have a preexisting depression with anxiety which has been prolonged more than expected due to Peyronie's disease. I was very close and confident to finally leave medication but then this condition made its appearance. I'm visiting a great psychologist too (although fortnightly).

Since I was a child, I've experienced vertigo for one day from time to time. Now I've grown up, I think those episodes relate to anxiety, because I don't have them since I've learned to cope with anxiety (and I'm on meds).

I have a pre-existing predilection towards depression as well as other auto-immune conditions (psoriasis & vertigo).

I've got a pre-existing depression issue and I am in weekly therapy, some days are better or worse than others, and the Peyronies Disease does sometimes reinforce my sense of despair but I am not actually planning on killing myself.

Are you taking some medication for treating depression?

It has been suggested that tryciclic antidepressants (among other drugs) interfere with the body's production of CoQ10 (that blocks TGF-beta1 indirectly by its antioxidant effects on mitochondria, whereas Pentox blocks it directly).

Mitochondrial dysfunction and resulting cellular dysfunction could be a trigger for immune system response involving overexpression of TGF-beta1.  Thus Ubiquinol deficiency appears closely tied to this sort of syndrome (Coenzyme Q10/Ubiquinone - Ubiquinol - Peyronies Society Forums [Page 4]).

I took Pentox for three days and developed a respiratory condition that gave me horrible coughing fits and almost killed me (I couldn't inhale for almost two minutes due to my throat closing up) and sent me to the ER during Hurricane Sandy's blackout days. I'm not 100% sure if the pentox caused the condition but I am now too scared to try it again as I might have a sensitivity to the drug.

You could had an allergic reaction (swallowing or breathing problems, swelling of throat, angioedema, bronchospasm).

How much Pentox did you take those three days? Are you taking some other medication that could interact with it?

In the past week I think my penis has gotten even shorter, it seems to be half of the size it once was, I don't know how much of this is psychological and how much is real but I am currently walking around completely obsessed with this disease

Maybe your psychologist have advised it to you, but you know that depression frequently entails excessive rumination in those persons with an obsessive personality.

I am afraid to touch my girlfriend, although she knows about my condition she has done almost no research to try and help me and also basically refuses to initiate intimate contact. She tells me she loves me and isn't going anywhere but I am insecure about the possibility of her having an affair or just simply moving out.

I think you two should talk a little bit about those worries you have. Keep in mind that there are many ways to have a have a full and satisfying sexual life in several ways other than coitus. And this condition may make a better lover out of you.

I would like to thank everyone for giving me the opportunity to vent, for what it's worth. I guess one thing that might help me deal with this situation would be direct contact from other Peyronies Disease sufferers.

And I would like to thank you for sharing your thoughts and feelings. They help others, like me.

Best regards.