Peyronies Society Forums

Read This First => Introduce Yourself => Topic started by: Cactus on July 29, 2017, 01:13:32 PM

Title: Years of pain
Post by: Cactus on July 29, 2017, 01:13:32 PM
Hi all,

About 4 years ago I was diagnosed with peyronies disease. I had been having regular, vigorous sex for two years and had a couple possible fractures when I started having constant pain in my penis. Upon inspection, I found that the underside was indented halfway up the shaft in the middle as if an invisible rubber band were wrapped around it. I saw a penis specialist urologist shortly after who diagnosed me with "penile pain". He told me to take ibuprofen and come back in 6 months if it didn't get better.

When I returned, an ultrasound was done on my flaccid penis. This revealed nothing and I was sent on my way with pentox for possible peyronies. I was told that this was the only treatment available to me. I stuck with it for 9 months, saw no improvement and began a year and a half of suppressing the pain with ibuprofen. I was convinced that nothing could really help me. After researching, it became apparent that my case was a rare presentation of peyronies affecting the corpus spongiosum with pain and no curvature. Despite the constant pain, loss of sensitivity, dysuria and post-ejaculatory soreness, I pressed on hoping it would get better. It never did and as of June it has gotten much worse.

I saw that urologist again that month for an erect ultrasound, but due to possible complications we decided against it. Instead, I showed him pictures I'd taken of the indent which were sufficient for him to decide he could not help me. He sent me to an anesthesiologist so that I can find a way to manage the pain. I am now taking methocarbamol, meloxicam, ibuprofen, Tylenol and tramadol everyday to get the pain to a semi-managable level. I am also taking pentox, acetyl l-carnitine, and vitamins e and d. I have started having hard flaccid, cold penis, severe pain when urinating and a lump of swollen and painful tissue at the base on the right underside. I'm 23 years old and my life is ruined. I cannot even fathom having an intimate relationship, being aroused or having an orgasm. It is impossible to envision another 60+ years of existing with this excrutiating condition but that seems to be where things are headed.
Title: Re: Years of pain
Post by: Stabler on July 29, 2017, 01:32:22 PM
Hi Cactus,

I am glad you found the forum. You do need to see a urologist that specializes in Peyronies. Ive sent you a PM with a link to our forum list of specialist Please look at it.

The forum is loaded with helpful information, browse the boards and post questions everyone here is ready to help.

Title: Re: Years of pain
Post by: Jack1909 on July 29, 2017, 03:23:27 PM
I've been in constant pain for 5 years, I know what you are experiencing. I feel for you and hope you'll find some relief somehow
Title: Re: Years of pain
Post by: Paolo on July 30, 2017, 03:02:33 AM
jack1909, is that mostly testicle pain?, what have you found to 'manage' the pain please
Title: Re: Years of pain
Post by: Toronto34 on July 30, 2017, 08:52:52 AM
You say that "after researching" you found that this was a rare form of Peyronies affecting the corpus spongosium. Is this a self-diagnosis? Where did you do your research? I am not saying it's wrong, I am just curious. Also, is the indentation visible at all times or just flaccid or just erect?

In terms of the hard flaccid symptoms, you might be having chronic pelvic floor dysfunction or CPPS on top of your Peyronies. This is not uncommon with guys on this forum. Working on relieving pelvic floor tension could help resolve the urological symptoms and some of the pain, it's definitely helped me a lot. I've also found it's helped my libido greatly. I am still dealing with issues, but I am better than I was 4-5 months ago. Let me know if you're interested and I can send you some tips.
Title: Re: Years of pain
Post by: Cactus on July 30, 2017, 02:47:30 PM
I was medically suspected to have peyronie's and self-diagnosed with peyronies of the spongiosum. My research was other reports of peyronie's here, at pegym and various health sites. I concluded that having a painful indentation on the underside of the penis is uncommon. I can see and feel the indentation when flaccid but it is only visible to others when erect.

In some ways I think it's not peyronie's but damaged tissue that never healed. I was having sex with really tight condoms, clenching my pc muscle and expanding my girth into the hard ring of the condoms for months during sex. Plus a couple possible fractures happened before I noticed the indent and the pain started. Doctors are unwilling to give credit to my theory that tight condoms played a role in this, but the pain, indentation and sensitivity loss is right where the base of the condoms went.

As for cpps, I saw a pelvic floor therapist on the 26th and she found a lot of tension in the bulbocavernosus. I have weekly appointments with her starting middle of  next month.
Title: Re: Years of pain
Post by: Cactus on July 30, 2017, 11:42:15 PM

I would be glad to hear any tips regarding cpps. Also, I say medically suspected because my post-appointment letter from the urologist says "slight firmness in the urethral plate consistent with peyronie's or prior injury". It is probably peyronies but the lack of ultrasound evidence and continued pain are a bit confusing.
Title: Re: Years of pain
Post by: Toronto34 on July 31, 2017, 10:10:07 AM
Yeah, it sounds frustrating, both with the symptoms and the lack of clarity of what’s causing them. I guess these problems are common around here. I am certainly dealing with them.

I do have an indentation on the underside, at the base of my penis, but it only appears or is only noticeable post-ejaculation. I am pretty sure it’s something to do with muscle tension as it is accompanied by bending and twisting of the penis that’s usually not there (or much less pronounced) when flaccid. My penis actually appears it’s most normal when erect now.

Narrowing and hourglassing happen with the hard flaccid condition, but it’s usually when flaccid or semi-erect. Some guys do report narrowing at the base when erect too. There’s lots of muscles in the base of the penis, where the pelvic floor muscles meet the penis muscles, so it would make sense to see more going on there.

I am going to send you a PM, but going to pelvic floor physio is a good first step. I am not sure what you’re dealing with exactly, but approaching it as a pelvic floor issue as well as Peyronies might be help bring relief.
Title: Re: Years of pain
Post by: Cactus on August 01, 2017, 12:24:26 AM
Now that you mention it, I have had occasional hard flaccid in the past month, suddenly developed a flaccid curve when I need to urinate and there seems to be narrowing where the penis connects to the internal muscles beneath the scrotum but not on the visible shaft. The curve and narrowing go away completely when erect and I seem to have less pain when I'm hard too. Hopefully PT will help with the pain and these new symptoms. Go ahead and send me the PM I'm interested in any help I can get regarding this. Thanks.