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  • Peyronie's Disease

    Has anyone else had this problem? I was recently told that I have a penile disease known as Peyronie's disease. My doctor seems to think it is somehow related to IC, but doesn't know how.

  • #2
    Hello Shane:

    I don't have any answers for your question but did find a website that you may get them from.It is an Urology forum that doctors answer questions related to this disorder.

    http://www.medhelp.org/perl6/urology/archive/31.html
    God bless, Yvonne

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    • #3
      Shane,

      Your question stirred my curiosity, so I've searched the medical literature (with National Library of Medicine's "PubMed" site; http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed ) using the terms "Peyronie" and "interstitial" or "cystitis", and all I found were:

      1) A 1988 paper showing that "locally administered superoxide dismutase" (works somewhat similar to DMSO) seemed beneficial coincidentally in both interstitial cystitis and Peyronie's disease;

      2) A 1998 research paper mentioning that "reorganization of the interstitial matrix" occurs in an animal model of a "Peyronie's-like condition".

      Don't know of anything really connecting the two.

      Jim (Ph.D. in Physiology)

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      • #4
        Is Peyronie's disease just pain when you ejaculate, or is it pain in general with sexual intercourse. I know for us women that sex is or can be extremely painful with IC, so it can be related. If Peyronie's disease is pain with ejaculation, I really don't know what the connection would be. You would think IC patients have it bad enough, but no, we have to have all these other illnesses on top of it. I wish you luck in finding a possible connection, and hope you feel better soon.

        Alisha

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        • #5
          Hi,

          Wish I could be of help. During the early stages of my IC, I believe I have had it for over 10 years, I did have pain during ejaculation but fortunately I no longer have that problem.

          For Shane and Jim - I am looking to correspond with other men who have IC. If interested please email me at [email protected]

          Shane I wish you the best.

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          • #6
            Alisha,

            Peyronie's is a disease that causes fibrosis of the connective tissues of the penis, which causes scar tissue build-up. This, in turn, can cause severe deformities to the point of intercourse being imposible or sometimes impotence. I think I have the same thing happening in my bladder. I think I may have some sort of systematic connective tissue disease.

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            • #7
              Well, being a newbie to the ICN group I may be out of line here, but...

              It seems to me that we all have a lot of similar circumstances that had us ALL suffering the same type of disease.

              I noticed in a couple of the posts that there is mention of different symptoms, yet, as I looked them over, I realized that I have had (at one time or another) most of the same symptoms over the years. It seems that this 'thing' just moves from one area to another and causes the different problems, then moves on to either add another or start another problem anew in our bodies.

              I don't like the situation any better than anyone else, and I would love to know that there are 'real' doctors that actually care about curing this problem, without getting the maximum billing from the insurance companies (well, I can still dream, can't I?).

              I, too would like to communicate with others that are suffering from the combined Cystitis/Peyronie effects that have made us all feel like we are less than we were at one time (or am I assuming too much by speaking for more than myself?) I don't have a problem with the overactive/underactive bladder (I've gotten used to it), or the weird shape of what I used to think was a fairly good-lookin' ... well, you know what I mean (I've gotten used to it), or the way I kind of 'point' in a different direction than I used to (I've gotten used to it), or that I have a problem with my postrate a bit (I've gotten used to it), or that my sex-drive has diminished (NOW, That I haven't gotten used to). But, I have been through a lot of the similar crap that, it seems, others have been going through, and I wouldn't mind finding out if there's hope, or should I expect some other things to (not) pop up in the future, too. <img src="graemlins/lmao.gif" border="0" alt="[lmao]" />

              So, post on gentlemen... and let's see if we can find a way to help each other to make lives a little easier for one another. [img]confused.gif[/img]

              Have a wonderful week... you made it through the last one, didn't you? This one will be better!!

              Steve

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              • #8
                Shane thats really interesting .....


                I have been searching for answers, which my physical therapist told me the other day I should just "get out of my head" because there ISNT one but....

                I had hypothesized a LONG time ago that this was connective tissue related (That my IC is.) Im super flexible.....my posture is horrible....etc. etc. I am looking into this with my doctor now. I am a Nurse in Nurse Practitioner school so I have been fascinated with all this. Jim in San Antonio was kind enough to send me some references as to the collagen theory. Of course IC is a complicated thing, and there could be many causes....neurological, endocrine....or perhaps collagen and thats what Im looking into. Out of curiosity, do you have blood in your urine on a usual basis? I think im going to ask the girls this question as well......
                I wish you all the best of luck. I hope you find some sense of support from other men here, because I know the support I found on ICN was comforting to me!!!
                Happy, Healthy New Year
                Rachel
                @[email protected]
                "Well the Secret O'Life is enjoying the passage of time." ~James Taylor

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                • #9
                  For the first year of my IC (before I was diagnosed), I was tested regularly and had no blood in my urine that I am aware of. It has been a while since my last one though, and I think I have noticed that my urine looks cloudy lately. But I have never had any noticeable blood in my urine.

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