Peyronie's Disease - My Personal Experience

The Despair of Peyronie's Disease


       My bout with Peyronie's disease came on rather gradually.  We were on a family vacation in Kauai, when it could no longer be ignored.  I could not understand what was going on with my penis.  It had been developing a curve prior to the vacation, but all of sudden erections had became painful and my penis was just going crazy.  I thought it was going to curl up like a pigs' tail.  My wife and I did not know how to cope with this new development.

       Upon returning from vacation, I made an appointment with our family doctor.  My wife helped me get an erection and we took a picture of it.  My penis had an almost 90 degree bend in it, and it was really starting to terrify me.  If you are at this point right now and feel that you are all alone.  Let me re-assure you, there are many men suffering with this treatable afflication.  My advice is to make an appointment with your doctor and get pro-active about your treatment, ASAP!

       I have a really great relationship with our family doctor. He is just a great guy and an outstanding doctor.  He took one look at the picture, and told me I had Peyronie's disease.  I had no idea what that was, and he gave me a good explanation.  He wrote out a referral for me to see a Urologist.  He said this was a condition that needed a specialist and knew a doctor that was very competent and had a lot of experience.  He handed me back my photo and told me to take it to my next appointment.  I felt a little reassured, at least something was happening toward my treatment.  I just figured that a Urologist would give me a prescription and it would all go away.  I hoped and prayed it would be that easy.

Peyronie's Patient being prepared for Surgery
       I went to my appointment and met my new Urologist.  He was an older gentleman.  He was an extremely competent man, and I felt like this was definitely the right place for me.  He looked at the photo and put it in my file.  He examined my penis, and ordered some lab tests.  I saw this doctor many times over a six month period of time.  I received Verapamil injections and purchased topical Verapamil cream from PD labs. The time went by slowly and my progress was non-existent.  I was becoming depressed and despondent about my condition.  I was really getting angry, it was just so unfair.  I needed my penis to get better, but it wasn't.  I was losing my confidence. I secretly feared my wife would leave me, and often thought about death.  I was not suicidal, no I just prayed that God would end my life for me.  It was during this dark time, that I went to my Urologist for the last time.  I didn't know it would be my last visit when I arrived.  The doctor did a quick examination and then asked me to sit down for a consultation.  He told me my plaque was very large and had invaded the Corpus Cavernosum.  It appeared to have stabilized and now it was time for me to consider my next avenue of treatment.  He said because of the size and depth of the plaque, my surgical options would be best limited to a Nesbit procedure. He drew me some pictures while describing the procedure.  The words, "It will shorten your Penis" seemed to echo through my head.  Other words like, possible complications and decreased sensitivity bludgeoned my psyche.  He ended the conversation with this: "When you hear the expression, 'Practicing Medicine' it really applies to Peyronie's disease. We really are practicing." He asked me to think about all that he said and after about a three month wait, just to make sure the plaque was stable, we could schedule the surgery if I wished. 


       I left his office in a daze.  I don't remember the drive home.  I walked into the house and laid down on the floor next to our bed and bawled my eyes out.  I felt like God had forsaken me.  I was all alone in my misery it seemed.  That evening, after regaining my composure, my wife and I sat down and discussed our options.  I knew in my heart that surgery was no longer an option, but I wanted to hear it from her.  She looked into my eyes and saw my pain and frustration.  She encouraged me to do some research and seek alternatives.  She reached out to me in love and held me.  We both cried.
       The following day I resolved to find an alternative treatment program.  I began reading everything I could on the subject.  There were resources available, but nothing was organized in a system.  It all seemed so hit and miss.  I began reading the forums, where there are so many heart wrenching stories.  There are the men who's wives have left them, and those that gave up hope, for a cure.  I'm sure there are the even sadder untold stories of suicide.

Happy Days are Here Again!!
       Over time I developed a systematic approach to this disease.  It was a battle plan to conquer and defeat my enemy.  I was at war and my enemy was Peyronie's disease.

Next: Causes of Peyronie's Disease

9 comments:

  1. This could be my story.
    I developed Peyronies two years ago and I am desperate at this point.

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  2. I developed this disease 10 years ago, it has progressed to the point that I can no longer get an erection at all. I think when it has progressed this far about all that can be done is a penile implant.

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  3. Thanks John for your wonderful blog, I have some questions.
    I understand your 3 phase battle plan and how to simultaneously deploy the strategy.
    I guess my question is, and I know each persons condition varies, so the question may seem irrelevant, but just out of interest sake, how long did you persist with the plan and at what time frames did you start to notice improvements? How long did it take to effectively cure your condition?
    My condition has I'm afraid possibly moved onto the stable stage as I haven't noticed any further bending for some time and erections are no longer painful.
    I never would have thought it originally, but now I'm inclined to believe it may have been brought on by an incident some time ago where my beloved wife crashed down on my erect penis during a rather physical encounter, with my penis unfortunately not entering her vagina but folding instead. I now have a permanent downward bend and thinning of the shaft at that point where it folded. The time between this incident and the bend starting to occur was considerably more than a year! Is this possible?

    I first noticed small lumps along the shaft of my penis so I went to the doc where he examined me and concluded that "It won't kill me" and that I shouldn't worry.
    Some months later I noticed a bend developing and uncomfortable erections. I had heard of Peyronies and learned it was incurable so I decided I had no option but to live with it, surgery is out of the question as its not affecting my sex life.
    The bend is not so bad, I can live with it, in fact it has lead to some surprising new techniques and sensations for both of us, but the thinning of the shaft is an issue with its inherent weakness. I welcome any comments on how you may think your treatment plan could improve things.

    Keep up the great work with your blog, an absolute gold mine of information in a world muddied by taboo.
    Thanks very much and best regards,
    Peter

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  4. Thank you Peter for your letter and great comments.

    It sounds like you experienced a penile fracture. This is actually quite common and can be extremely painful and traumatic as well as sometimes surprisingly, not all that painful. The time span is not surprising as fibrin buildup occurs at the injury site and then can continue to deposit slowly over time. The tunica albuginea is a sheath with relatively low blood flow and that is usually where the scar builds up. Each man is different and you may have very good circulation which would cause the fibrin to build up more slowly at the site of the injury.

    I noticed a change in the curvature after a couple of months and continued the plan for six months. At that time my almost 90 degree bend had reduced to almost nothing. I am left with a very slight curve and no palpable plaque. But it is for the most part straight and my erections are normal. My wife is thrilled with the results of treatment.

    Sorry about the long delay in getting back to you on your questions, I am just now returning to working this site. I moved to a remote location in Idaho panhandle and was without internet access for some time.

    I think that thinning of the shaft would be helped by Traction and also hot compresses before applying the topical gel. I used a hot washcloth. Studies have shown that heat treatment (Hyperthermia) softens and unwinds the collagen molecule. My reasoning is that after softening the scar with heat, then attack it with DMSO and SSKI, while it is in a softened state. I'm not a doctor, so that is my opinion for what it is worth.

    The world is so full of taboo's and us guys with Peyronie's would have to be considered an odd fraternity. I decided to put a name and face to the condition, because it is nothing to be ashamed of. It is just something terrible that happens, and finding information can be difficult and embarrassing.

    Thanks again - John

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  5. Hello John,
    Not to be pessimistic but after seeing a Urologist, he told me that the placque is 'far too deep' to have any impact at all from any topical medications. So I would need serious convincing evidence that your Phase III approach had success. And what exactly is DMO and SSKI ?

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    1. Thank you for your comment and question, I will try and answer this to the best of my ability, as I am a layman and not a physician.

      DMSO is a solvent that effectively penetrates the skin barrier. It has been used successfully in the treatment of Scleroderma, a disorder in which collagen builds up initially in the fingers, toes, face and appendages. DMSO has been used topically to break up collagen and relieve pressure and pain. Peyronie's is related to Scleroderma as a collagen disorder, but it is not life threatening and Scleroderma can be. http://www.jacoblab.com/Studies.htm#a8

      SSKI, Postassium Iodide is effective in the treatment of scar tissue. It has been used to reduce and smooth Keloid scars. Combining SSKI with DMSO gives you the best of both products. Dr. Jonathan Wright of the Tahoma medical clinic uses this topical gel combination to treat patients with Peyronie's. http://tahomaclinicblog.com/iodide/

      Please follow the links in the comment above to read more extensively about these products. By combining SSKI's scar reducing qualities with DMSO's skin penetrating and anti-inflammatory qualities, I was getting the best product to go after the plaque. I did purchase a prescription of Verapamil, with no success or improvement.

      Urologists commonly prescribe topical Verapamil, which is made by compounding pharmacists. It is successful for some patients and not successful for others. So the thinking that a topical medication cannot have any impact is really unfounded. My opinion of Western medicine, is that doctors treat most disorders with Pharmaceuticals or Surgery, and often a combination of the two. They go after the symptoms without treating the cause. I hope this information is helpful in answering your question.

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    2. I forgot to put this link in about the pharmacology of DMSO, it has some great information about membrane penetration and the anti-inflammation qualities of DMSO. The abstract was produced by Stanley W. Jacob and Robert Herschler
      Department of Surgery • Oregon Health Science University • Portland, Oregon 97201

      http://www.dmso.org/articles/information/herschler.htm

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  6. Hi John. Don't know if you'll see this. Looks like a while since you've posted. I only noticed a problem less than a month ago. Up to that point, everything was absolutely fine. I'm 55 and the first thing I noticed was an indentation across the top and proximal part of the penis shaft while erect. I looked like someone pressed down on top of it with a nail and when I pushed my penis up from underneath, it appeared "broken" (not a hard bend)! I haven't seen too many men exhibiting this problem; like the tissue underneath the indentation was gone! I also felt a pea-sized lump underneath the indentation near the middle of the shaft. I've also got nearly constant mild pain in the head in the flaccid state. I'm afraid, but my wife and I are going to try stimulation soon. (She's an amazingly understanding Christian woman). An exam last week by a urologist revealed Peyronies and he explained the indentation was scar tissue, and basically said to continue on and don't worry about it! He didn't feel anything was necessary to do at this point. I've decided to become very proactive and have already gotten the necessary topical and oral supplementation after a massive amount of research online. It's only been a month since I've noticed anything at all and am hopeful that starting early will be beneficial. I'm mostly concerned about the loss (if it is a loss) of tissue on the top of the penis and wondered if you know of anyone experiencing the same thing and if the tissue was able to rebuild after some time with alternative therapy? Thank you. Mike

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    1. Thank you, Mike for your detailed message. I am sorry for what you are going through at this time. It is difficult and scary when Peyronie's strikes. The best time to be proactive is in the early stages, and I believe you are wise in going after it aggressively, while the plaque is not yet stable. It is your penis and not your doctor's, so he is not in your shoes and does not have so much riding on a policy of taking no action.

      Many times when a man sees an indentation where the plaque is located, the underlying tissue is being displaced by the scar tissue. The tissue may not be gone, it is just pushed away to the side from the pressure of the scar tissue, which is stiffer and much less pliable than the normal tissue in the penis. In this case it will feel like the tissue has gone away. I have heard of men that have had a major loss of penis tissue, but that is usually in long term chronic cases of Peyronie's, where much of the tissue has wasted away from waiting and not taking any therapeutic action. There are men that have emailed me, asking for advice that have had major loss of penis tissue.

      Every man reacts differently and there are so many different causes, which is very frustrating for treatment. The problem with Peyronie's is there is not a single treatment program that is effective for every man. There are no guarantees of success, but that being said, being positive, aggressive in your treatment, and proactive are a big factors in successfully treating this condition.

      My personal belief is that there is a lot of healing power in prayer. Many people do not share my belief, but believing in something bigger than myself, and believing in a creative and powerful God, was one of the fundamental treatment protocols in my own successful treatment program.

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