Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

ALL Members PLEASE Add a Signature line with age, history etc
PROFILE -> FORUM PROFILE -> SIGNATURE
More instructions here -> Signature Line - History - Peyronies Society Forums

Pages: [1]   Go Down

Author Topic: Still in pre-diagnosis stage. Trying to get a head start. Atypical Peyronie's?  (Read 2708 times)

0 Members and 1 Guest are viewing this topic.

egpd

  • PDS Newbie
  • *
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 3

Hello, everyone. So around 2 months ago, I noticed a hard structure deep within the tissues of my flaccid penis, just a little bit behind the head. I guess you could call it the "neck" of the penis. It might have been there for some time before and I just hadn't noticed it. There's sort of a lump on the top-side and a band of hardened tissue that wraps around the circumference in a semi-circle. The strange thing about this that doesn't sound like typical Peyronie's is that the semi-circular band is totally symmetrical and each "arm" of it that wraps around my penis terminates on the underside in a sort of sharply-angled point. Like I said, it's totally symmetrical, so both ends have this exact same angular structure. It seriously feels like I have a uniformly-structured piece of cartilage embedded in my penis.

My erection is totally straight and basically normal other than a slight feeling of tightness and numbness in the area where the band is. Sometimes I wake up with nocturnal erections that are a bit uncomfortable and painful, but my erections when awake arent' like this. It seems as though my nocturnal erections are unusually hard to the point of straining and perhaps go on for a long period of time, thus causing the discomfort. I'd previously suffered from schlerosing lymphanangitis of the penis where I felt a hard chord-like structure running down my penis shaft and a few small hard lumps in the same "neck" area just behind the head. Those eventually resolved on their own but only after many months of inactivity. When I first felt this hardened tissue, I figured it was the same thing and hoped it would just resolve on its own. However, I stupidly didn't abstain from sexual activity, which I realize now was a big mistake. I became concerned when I eventually noticed a decrease in sensitivity in that area of my penis during sex and connected the problem with a bad habit I had during intercourse. I would regularly allow my erect penis to bend in that area for long periods of time which probably caused some damage. I would also regularly engage in sex for an hour or more without ejaculating as well (even before the numbness), which probably also wasn't a good idea. I never felt a sharp crack or pop, only some numb/aching soreness in the area after sex, which would eventually resolve. I'm thinking I may have done this bending and the marathon intercourse sessions too many times and my body reacted by forming this hardened tissue. I'm still really hoping it will resolve after a period of inactivity, but if it is Peyronie's, it doesn't sound like that will be happening.  :(

I went to a urologist a week ago and he thought the hardened tissue felt abnormally thick and strangely structured. He even brought in a colleague to get a second opinion. He then stuck a camera in my urethra and bladder to make sure he didn't see anything abnormal, and apparently, it was all OK. He ordered an ultrasound and said he wanted to rule out cancer. He wasn't very sensitive about laying this on me. I mean, I really don't think penile cancer presents itself as a symmetrical, internal semi-circular band of hardened tissue. There are absolutely no visible signs of the problem on the skin or the structure of the penis. The problem can only be felt by squeezing the area, as it is not on the surface. If I hadn't already been familiar with the typical diagnostic signs of penile cancer, I would be totally freaking out right now. To help ease my nerves, the doctor really could and should have told me that it was highly unlikely, but apparently he still thinks it's a possibility. I'm not circumcised, which I understand is an added risk factor, but I still very highly doubt it's cancer.

I had the ultrasound and the results were "inconclusive." It only showed some form of "calcification" but it seems the x-ray tech had a hard time displaying the area in a way that made things clear. I remember him fumbling a lot, trying to go over the area from different angles. The doctor then ordered an MRI, which I have yet to undergo. He said the problem could be Peyronie's but that they still need to rule out cancer and that an MRI will apparently do this. All this cancer talk is starting to freak me out but since I know this problem is associated with trauma and that penile cancer presents itself a different way, I'm not quite in heart attack mode. I'm trying to get this MRI scheduled ASAP so I can know what I'm dealing with. Another bad thing is that my urologist says there's "no treatment" for Peyronie's. I tried to get a clear answer as to whether or not they offer any kind of treatment for it, but he basically pushed me back and told me he'll discuss it with me once we get the MRI results. I told him I'd read that Vitamin E might help and he said it hadn't been proven and told me NOT to take anything. Well, I already started taking 400 IU of Vit E five days ago and figured I'd better just keep doing so and keep the info to myself. My urologist is at Kaiser Permanente, an HMO in Northern California. If it turns out that they offer no treatment for Peyronie's, I'll have to seek help outside of my HMO. I'm not sure what Kaiser's policy is on that and if they'll at least cover a portion of it. It would really suck to have to pay totally out-of-pocket.  >:(

Anyway, I just wanted to introduce myself. Does my description of symptoms sound familiar to anyone? The structure of the lesion doesn't sound like anything I've read in other descriptions. Any advice on dealing with my doctor? I'm getting upset already by the way he's treating me and anticipate that I'll really have to fight to receive adequate treatment. Anyone else out there dealt with the Kaiser system? Looking forward to any helpful responses.
Logged

Hawk

  • 22cm Bionic Penis - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Online Online
  • Gender: Male
  • Posts: 3538
    • Peyronie's Disease

Welcome to the forum.  I doubt that this is cancer but being a cancer survivor there is really only one way to nake a definitive diagnosis of cancer and that is with a cellular examination of a biopsy.

I know Calif. is a big state but if I lived in Calif I would go to Dr. Tom Lue, UCSF Medical Center, San Francisco.  There is no better in North America.  Here are a couple other options.  You can find their contact numbers with a Google search.

Dr. Martin Gelbard   
Burbank, CA

Dr. Scott Zeitlin   
Los Angeles, CA
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old - After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

james1947

  • Major Contributor
  • ****
  • Country: ro
  • Offline Offline
  • Gender: Male
  • Posts: 6553
  • Age 70. Peyronies from January 2009

I will second Hawk that you have to see a specialist as soon as you can and Dr. Lue is one of the bests.
Unfortunately we can't help you to diagnose what you have by the Internet, we are not doctors also but what you are describing may be Peyronies. The half circle you are mentioning is very usual, lump as well.

Welcome to the forum
James
Logged
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe erectile dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Old Man

  • Senior Member - Major Contributor
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 2131

James: In the quote from your post below, don't you mean "we cannot help you to diagnose" rather than can help, etc.?

Old Man

[Unfortunately we can help you to diagnose what you have by the Internet, we are not doctors also but what you are describing may be Peyronies. The half circle you are mentioning is very usual, lump as well.}

 
Logged
Peyronies Disease @ age 24, Prostatectomy 1995. Started VED therapy 1995, Heart surgery 2004.three passes with three stents.

james1947

  • Major Contributor
  • ****
  • Country: ro
  • Offline Offline
  • Gender: Male
  • Posts: 6553
  • Age 70. Peyronies from January 2009

Old Man

Thanks for the correction, I wanted to write can't and not can.
Maybe  I should type slower. :)

James
Logged
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe erectile dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

0x5555

  • Voting Member
  • **
  • Country: ca
  • Offline Offline
  • Gender: Male
  • Posts: 93

Do you have pain or discomfort?  Any pain on erection or anything like that?

The only really scary thing is penis fractures which are basically tears in the tissue that have to be repaired surgically.

I had something similar to what you had though with quite a bit of pain.  I personally didn't give my body rest and time to recover - continued to jerk off and have sex and I personally think that this contributed to my problems getting worse instead of at least stabilizing.

It's REALLY hard to find a urologist who will be able to give you a straight answer as there don't seem to be really definitive diagnostic tools which they can do to find out what's wrong with you.  As you say ultrasounds are not always good at finding things.  I have had several ultrasounds of my flacid penis that show absolutely nothing and yet I have incredible amounts of pain, I and my urologist can feel lumps and I have deformity when I am erect.  Multiple ultrasounds have shown absolutely nothing at all.

Wish I could give you some more advice. 
Logged

Hawk

  • 22cm Bionic Penis - Dr. Eid 8/7/18
  • Administrator
  • *****
  • Country: us
  • Online Online
  • Gender: Male
  • Posts: 3538
    • Peyronie's Disease

I and my urologist can feel lumps and I have deformity when I am erect.  Multiple ultrasounds have shown absolutely nothing at all.

I have to say that you may be the first I have heard  of that had palpable plaque that did not show up on a duplex Doppler ultrasonography.
Logged
Prostatectomy 2004, radiation 2009, currently 68 yrs old - After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

egpd

  • PDS Newbie
  • *
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 3

Hi, guys. Thanks for the replies. I wasn't able to get an MRI appointment until the 25th so I'll still be in limbo for a while. Dr. Lue sounds like a great option if Kaiser doesn't work out. If they refuse to treat me, they really should help me get help elsewhere. Yes, the ultrasound was a joke. The tech must've gone over the area 20 times and didn't seem to be able to find what he was looking for. How exactly would they do a biopsy? With a needle or something? I thought a biopsy was the only definitive test, too, but my doctor said an MRI should be enough.

0x5555: It's not really that painful. Just kind of achy and irritated after sex and it hurts a bit when I get nocturnal erections that are unusually hard and prolonged. The worst part for me is the decreased sensitivity in that area. I didn't notice any specific traumatic injury, just a gradual wear-and-tear from being too ambitious, sexually, both in terms of duration and structural strain. I was treating my penis like it was made of titanium and that was probably not such a good idea, in hindsight. I really should have laid off when I first noticed the hardness but it didn't hurt at all then and wasn't numbed yet. It's like I calloused the area or something. I really hope it can still heal at least a bit.

I'm still wondering if this could be some hardcore form of sclerosing lymphangitis. I've had that before and I think I might be prone to it. It seems I have sluggish lymphatic flow in the pelvic region in general. I've had aches in my groin and inner thigh where the lymph nodes are for years, but the nodes are not swollen at all. It just really seems like there is a specific structure in there that has hardened and I'm wondering if it's a lymphatic vessel. It's hard for me to describe but the way it wraps around the top with each end terminating at the bottom in these angular "corners" that are completely symmetrical just doesn't seem like descriptions of  peyronie's plaques I've read so far. Has something like this ever been described on this forum?
Logged

CPPS

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Posts: 5

Has anyone else experienced what EGPD describes? I am currently going through the same exact thing! I am going to try to get an appointment with a urologist, but would like to know if you guys know anything about these symptoms.

I have a hard ring around head of penis, dull ache (specifically on right side of shaft and left side of head ,prolonged night time erections where I have to get up to make it go down, etc...

I have already messaged EDGP. I hope that he optioned to receive an e-mail message, since he hasn't logged-in in 6 months. Crossing my fingers.
Logged

Steveo

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 111

My issue seems to be similar to the previous posters'. 

A few months after an overly aggressive handjob which involved the woman wrapping her thumb and index finger laterally around the coronal sulcus (where the 'head' of the penis meets the shaft) and twisting, I developed a partial "ring" of hard tissue under the skin in the dorsal (top) side of the penis there in the coronal sulcus. 

This plaque started as a small lump in the exact top center and gradually grew "down" around the coronal sulcus until it formed a partial ring.  A year later, it stretches about 45 degrees down each side, meaning that the top quarter of the coronal sulcus has this ring-like plaque under the skin.

It is slightly visible in both flaccid and erect states.  Unfortunately it does cause an upward curvature of the head of the penis, about 25 degrees.  This bend only happens when the penis is fully erect and doesn't seem to interfere with obtaining an erection.

Like what the other posters describe, each descending "arm" of the partial ring of hard plaque ends in what seems to be a sharp "point" which can be easily felt.

Even a year after the initial injury, the plaque continues to hurt at various times.  I'm currently on CoQ10, pentox, acetyl l-carnitine, fish oil, curcumin, multivitamins, occasional cialis.  I recently ordered a VED which I plan to begin employing when it arrives. 

I started the pentox and cucumin within the past month.  The other drugs were started about 4 months ago.  I have not seen any change in that time.

Regarding the VED, I plan to use it along with hyperthermia to (hopefully) remodel the plaque more quickly.  Specifically, I took some thick fabric and cut a slot in it that matches the approximate size of the scar.  I have been taking a hot water bottle, filling it with hot water between 40-45 degrees C (104-113 F), and putting it on my penis with the fabric in between.  This assures that the heat will be concentrated in the scar area.

This temperature is not high enough to cause pain but is high enough to cause the scar collagen to begin to break down slightly and upregulate the production of elastin.  (See http://www.google.com/patents/US20120116346 ).  I aim to see if hyperthermia, coupled with VED, works :)
Logged

james1947

  • Major Contributor
  • ****
  • Country: ro
  • Offline Offline
  • Gender: Male
  • Posts: 6553
  • Age 70. Peyronies from January 2009

This topic is ending as a introductory topic.
Please discuss specific subjects on the specific boards - James


Steveo
If you are interested in Hyperthermia, make a forum search for hypothermia.
You will find 11 posts on the subject, maybe they will be of interest for you.

James
Logged
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe erectile dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
2 Replies
2606 Views
Last post March 10, 2014, 03:12:46 AM
by Njnist
4 Replies
1688 Views
Last post June 01, 2014, 12:44:13 AM
by UrsusMinor
4 Replies
463 Views
Last post April 11, 2018, 04:31:54 AM
by Hicran571