Dealing

[hope4all]

This website has been my sanity on and off for 5 years now.  I've been a "lurker", passively looking in and following the posts from time to time...at first everyday when I first saw the curve and then less and less as I learned to live with it and not obsess about it everyday.  First, thank you to EVERYONE for the courage to share your stories, I'm sorry I haven't shared mine sooner.  Everyone is on their own timeline.

I was in my early 40s and injured while my new boyfriend at the time was on top of me and I was not at full staff, Jan. 2009.  A few weeks later the upward curve of nearly 70 degrees with indentations and hinging. In the first few months it was a very dynamic disease with my penis changing almost daily. (this is still probably true with the plaque,some days it's harder than others)  It's now settled at about a 50-60 degree upward with denting and I'd say at least 2 inches less now. The pain was constant at first, a nagging low grade pain all day and night for 3-6 months. I immediately researched and found this site, thank you! Made an appt to an useless dinosaur of a doctor.  "nothing you can do, it may go away...you'll have to live with it".  Basically no empathy or bedside manner.  Next doctor was better, much younger and understanding...told me to try the traction, VED, Pentox, and daily Cialis as the Peyronies Disease was causing ED.  He said try all this for several months and come back if it's the same or worse and then we can try Verapmil injections if needed.

Got the fastsize traction device and used it for a few months but all the hours and such discomfort?!  The head of my penis was so raw from the noose, and I'm a road warrior for work, so not ideal.  Did VED for about 2-3 months, and stopped around the time I started getting Verapamil shots.  

I'm sensitive to almost all meds and Pentox was no different.  After two or three weeks I couldn't keep it down.  The Cialis was great at nocturnal erections but all the side effects, headaches, flushing, back aches, sinus congestion...I got them all. I then changed when I took it, started taking it at bedtime, 2.5 mg which helped remedy many of the side effects since I was asleep and couldn't feel the worst of it. Huge fan of daily Cialis.

I'm not sure how good of a doctor the 2nd one was because he didn't do any ultrasound to see the plaque, but it was very palpable so maybe that's why he didn't.  Anyway I did 6 rounds of verapamil shots before I stopped altogether and forgot about this disease for a while and just lived with it.  

I don't think the good doctor was so good with his aim or technique.  I had the absolute worst bruising every single time and hematoma's, very demoralizing.  I would go in there and have an outer body experience, "I can't believe I am watching this guy prick me repeatedly into my penis, is this really happening to me?". After the sixth time I noticed pea sized nodules developing around where he was shooting the Verapamil.  I canceled my other appts and took some time off from my penis obsession. I also felt incredibly guilty for obsessing over this when people i knew around me were dealing with cancer or other life threatening diseases.

I needed some time off from this disease...so I just lived my day to day and adjusted my love making techniques...unfortunately at the same time I stopped taking my antidepressants and stopped working out.  Fast forward 4 years and 30 pounds later...and I had enough of the self pity. I'm now back in tip top shape, lean and 30 lbs lighter; happy with most aspects of my life.  Started VED again and daily Cialis and now seriously considering Xiaflex.  

I live in Miami and I have a real distrust for doctors down here. There are a lot of scammers and schemers.  I've recently followed the PRP, stem cell thing posts, which sound promising and some of the Xiaflex posts have given me hope too.

Psychologically this disease has beaten me up.  I grew up with a bit of a complex since many of the other boys in the locker room at school were show-ers unlike me...so that insecurity has grown (pun intended) since this disease. My partner could care less about the curve or decrease in size, but I do.  

This is long partly because I waited so long to post.  I'm ready, finally.

[NeoV]

Welcome hope4all! Glad to hear your story, sounds like you're on the right track. Looking forward to having your voice in the forums.

[welshwales]

Hello hope4all, I very much empathize with your story. I think coming to terms with the disease is one of the hardest aspects. And while our partners profess not to mind the size reduction or deformity, actually owning a penis like that is a very different matter. Should you choose  the xiaflex or PRP treatment route I'll be interested to hear how it goes.

[hope4all]

Thanks NeoV and Weshwales.  I'd like to be as whole as possible but after all the treatments I've learned to temper my expectations a bit.  I'd like to fix the hinging effect so it doesn't bend back upon thrusting and injure me even further.

When I lived in the DC area, I went to "the top" urologist at Johns Hopkins, so I've had my share of urology visits. He was a top doctor just not for Peyronies Disease which I've learned is REALLY important to ask prior to the visit.  He gave me a brochure on implants and said that was the route I should choose. Uhhhh, no thank you.  Not just yet.

Peyronies Disease is just now coming out of the shadows of shame and embarrassment partly due to other embarrassing conditions being aired on primetime television by drug companies, bladder leakage, ED, etc.  I'm very open with my friends so they know the struggles I've been through and now are very educated on Peyronies Disease, they don't laugh about it anymore.  The media finds this somewhat salacious, it sounds ridiculous and frivolous when reported on mainstream media sites with comments from trolls ridiculing us. Being a sexually repressed society it's to be expected. The U.S. is like a teenage boy who laughs at farts and jokes about sexual matters.  

Anyway, good to be on here.  Thanks.  

[LWillisjr]

hope4all,
Really appreciated reading your story. Thanks for sharing with all of us. And I'm sure you know we are all here to support you and each other. Since you have been on the forum for awhile I won't got into further details. I'm sure you have read the various treatments and success stories and well educated on the topic of Peyronies.