My Peyronie's Story so far

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vidamas

Hey everyone.  I've had Peyronie's for nearly a year now.  It had been stable for the last 8 months but now is changing again.  This is my first post here, to introduce myself and tell my story.  Been reading lots on these forums - thanks to everyone for their input and sharing their experiences.

My personal history:
It's been about a year since this all started, so some of the events may not be exactly in the order I remember now, but basically this is how it all unfolded.

Around September 2013:
I was 36 years old.  Pretty healthy guy – fit and active.  Reasonable weight, run regularly, eat well, don't smoke.  Tend to get at least 7 hours of sleep every night.  When this all started I did drink quite a bit more than I had previously in my life, not every day but some days 5 or more drinks at a time.

I first noticed a hard lump in the center of my penis when absent mindedly massaging it while flaccid.  Lump was not painful, and about the size of a BB.  Seemed to be located in the dead-center of the penis, in the upper 1/3, near where the circumcision scar is.  I could always find it here just by putting my finger on the scar and squeezing between my thumb and finger placed on the top and bottom of the penis.  

In conjunction with noticing the lump, I noticed a rapid change in erection.  First, the upper ¼ of the penis curved to the right, like the curve in your thumb when giving a "thumbs up".  This seemed to happen overnight.  The next time I was erect the curve had started to going back to the left, leaving the head nearly straight again.  Again, seemed to happen in only a few days' time.  Immediately with the curving and subsequent straightening I noticed a loss of length.  The fullness of the erections also decreased dramatically, as the head would no longer become firm and full, but rather seemed quite shrunken from only a week or two previously.

Along with the change in erect length and girth, the flaccid state seemed quite reduced as well.  It seemed like there wasn't much blood flow into it anymore.  

I have no idea what caused it.  I can't think of any "trauma" that occurred or anything unusual, or changes in habit (besides the increase in alcohol).  Seemed to be working fine one day and then trouble the next.

About a month into it (October 2013) I visited the GP, as it seemed like it wasn't going away.  She immediately pinned it as Peyronie's, and pulled up the Wikipedia page on it to describe it to me!  This was not reassuring, as I expected her to be the reference, not Wikipedia! Her dismissal of cancer and other nasty things was reassuring, but she said there's no cure and it won't go away.  This already confirmed my own research, mostly through this forum and other web pages.  She ordered an ultrasound and after much embarrassment at the shrunken flaccid state during the ultrasound they finally were able to get good image of the plaque.  Ultrasound report said the lump was in the tunica of the penis.

My GP made me a referral to the Urology department at the public hospital (public health care system here).  The wait time was something like 6 months for an appointment.  She also prescribed Cialis for the ED I had begun experiencing.  I did not take the Cialis initially, as I had concerns about becoming dependent on the stuff.  I did start taking daily Vitamin E.

In conjunction with all this, relationship issues with my wife were flaring up.  Though she has been very supportive and understanding of this disease, our relationship has hung in the balance for some time (and continues to).  So, psychological issues certainly are playing a part in my ED as well.

I had been experiencing pain with erections occasionally, mostly when really hard.  Sex was still possible and enjoyable, though the pain was distracting.  I got sick of waiting for the public hospital appointment, and booked an appointment with a Uro I found on google.  The Dr looked at my ultrasound and immediately said it was peyronie's.  He wasn't sure what to do though, so he phoned a friend.  The friend didn't answer, so he guessed that Tamoxifen would be best for me, as he "seemed to recall someone else had good success with it".  He did not impress me in any way shape or form.   I did some research on the Tamoxifen and decided to hold off on taking it as the studies didn't really show that much benefit, and the side-effects seemed nasty.  I continued taking Vitamin E.

Disappointed, I waited for the appointment at the hospital, which finally came in February of this year.  Unfortunately, they gave the same prognosis, and the same course of action – that being "wait and see how bad it gets then we'll do surgery if we have to".  Sorry, but not interested in that (suregery).  I trusted in their directions....but also took advice off these forums for what supplements, etc to start taking.

Through self examination I determined that there were 3 plaques – the original one in the center of the penis was still there, still in the same spot.  Also there were two on either side of the penis near the tip, just behind the glans.  These two would have been the ones responsible for the right and then left bends I experienced early on.  They are more dispersed and spread out rather than the one in the middle which is quite spherical.

I started to take Acetyl-L-Carntine regularly – at one stage 2 in the morning and 2 at night.  I believed that this helped with the flaccid state by giving more blood flow.  Also helped a little with erections I think.  Vitamin E seemed to not do anything at all, and so I stopped taking it due to concerns it could counteract other measures, specifically the Tamoxifen.  Unhappy with the hospital's "wait and see" approach I began taking the Tamoxifen that the first idiot Urologist had prescribed.  I didn't notice any side-effects, so this was good.  I regularly examined myself, but tried not to be too worrisome about it, convinced that worrying wouldn't do me much good.  It seemed for a while that the plaque in the center was shrinking, and also that it was moving toward the base of my penis.  A few times I got really excited because I couldn't hardly feel any lump at all!  But all was not well.  I noticed a sharp decline in my ability to get and maintain an erection.  At least 50% of the time I could not hold out to orgasm.  Again, psychological relationship issues were partly to blame, but I also read that Tamoxifen has been directly linked to ED as well.  So after 6 weeks I stopped taking the Tamoxifen.

Interspersed throughout this I did occasionally take the cialis, mainly when on the Tamoxifen, due to the increased experience of ED.  I took it when I would need a little extra insurance policy for the bedroom, but still have only gotten through half a pack of 28.  Usually I would take half a 5mg pill, and it seemed to at least help with the flaccid state.  Whole pills do their job and give good erections for a day or two after taking them.

It's now August 2014.  About 4 weeks ago I began to notice a slight downward bend in my erections.  I put it off to gravity having an effect on weak erections, not wanting to believe that it was getting worse after having stabilized these last 8 months.  Well, last night I verified and can no longer deny there are new plaques and there is a definite downward bend that has developed.  The new plaque is at the right hand base of the penis.  And in addition there seems to be a much bigger, though not as hard area in the centre bottom of the penis – as if the tissue is half-way to being a plaque there too.  There has been a sort of constant light burning sensation throughout the penis for the last few days as well - almost like a UTI but that's the only symptom that matches a UTI.  Was really hoping that it was done changing.

Two weeks ago I had a follow-up 6 month appointment from the initial February appointment at the public hospital.  Same prognosis, same course of action....wait and see.....has to be stable before we do anything...etc

So, I am taking this into my own hands.  I am scouring these boards again to find the course of action that most makes sense to me, and I am going to do my best to believe in that course of action and believe in my body's own ability to heal, when given the chance.

It certainly is a disheartening disease, but I feel I have been very fortunate with how it has affected me so far.  Lots of guys are older when they get it, and some younger, but really, up till this new downward bend which I hope to stop in its tracks, you wouldn't know I had anything wrong with me if you had never seen my penis before (at its previous length or girth).

Any suggestions, or comments, or words of encouragement are appreciated!  

I am curious first of all if anyone has any suggestions for a GOOD Urologist in the Sydney, Australia area.  This would be a big help!  


Thanks for listening, and thanks for the support.  This forum is by far the best resource for those of us with this disease.
Good luck!

james1947

vidamas

I don't know a good urologist in Australia except what you will find in the link bellow because we didn't got any input from Australian sufferers:
https://www.peyroniesforum.net/index.php/topic,4063.0.html
Regarding treatment, I was proposing you VED (carefully not to over-pump), 3*400 mg Pentox, 5 mg Cialis and CoQ10.
I am also proposing you to read the forum to understand how other people are treating they Peyronies.

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

NeoV

Welcome to the boards and sorry as hell you have this.

I also have burning at the tip of my penis and it's hell! In my case it seems to be from a slightly torn meatus or urethral opening. I don't think anything but surgery can fix it unfortunately. Having that and Peyronie's is no fun. Looks like you have the right attitude, read up as much as you can and hope to see you around.

vidamas

Quote from: james1947 on August 18, 2014, 08:17:24 AM
vidamas

I don't know a good urologist in Australia except what you will find in the link bellow because we didn't got any input from Australian sufferers:
https://www.peyroniesforum.net/index.php/topic,4063.0.html

<Full quote edited by Admin>

Thanks James - I found a Chris McMahon listed in another area of the forum and he's not far from me.  I've made an appointment for next week - we'll see how it goes.  I asked the last Urologist about using a VED and Pentox, and like I said, his approach was "wait for it to stop changing then we'll think about surgery".  So hopefully this doc is more receptive.  I am currently taking 300mg of CoQ10 every night, along with Acetyl-L-Carnitine.

In terms of a VED - I know there is a board here with highlights of suggested models (or even how to make your own).  Do you have a particular recommendation for one?  

Thanks!

Old Man

vidamas:

There are many and varied models of VEDs available around the world. However, it is highly recommended NOT to purchase a ''sex toy'' model. They tend to not have very good quality and in most cases to not last long with heavy use as needed with VED vacuum therapy on a daily basis.

Since you live in Australia, you need to post the question from members there where they are able to buy the VEDs they are using. I have been using VED therapy for about 25 years now and I find that the old Osbon Erecaid/Classic VEDs as well as the Augusta Medical Systems VEDs work best for me and many members of the forum. The Erecaid models are one cylinder systems that provide all the accessories needed for Peyronies Disease and/or ED therapy. The Augusta VED models also provide the  same accessories.

I am currently using the Augusta SomaCorrect three cylinder system of VED. They are available from a diabetic company in the USA and possibly in Australia. The Augusta Soma models are available from the Augusta company as well as on Amazon and sometimes on EBay. Several countries around the world do not permit these devices to be imported so you need to check out that before purchasing one. Customs can and will be heavy in some countries as well.

You should get answers from other members on the forum as well about where they purchased their VEDs.
If you have questions about other sources PM me for them also.

Old Man

Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

james1947

vidamas

I would just add that in my opinion, you should not see again a doctor that telling you:
Quote"wait for it to stop changing then we'll think about surgery"
This is the worst possible approach to Peyronies, this urologist is back in time, maybe still in the times of Homo Neanderthals.

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