Hello! New to forum, on 4th yr with Peyronies

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King33

Hello!  I have been battling the many facets of peyronies for the last 4 years of my life.  I am slightly disappointed that I have found this forum so late in the stages of my condition, but am ecstatic that I have found it now and am hoping that sharing my experiences with the disease will help me find new insight, and some ideas to discuss with my doc for future treatment.  Let's just go ahead and get started on my timeline...

When I was 27 I began experiencing considerable pain during erections.  After the second time I made an appointment with a urologist to figure out what was going on.   There was a bump on the lower right side of my shaft that you couldn't see, but it could be felt, and immediately the dr said it was peyronnies and recommended I begin taking acetyl l-carnitine supplements and to come back and see him in 6 months.  He also told me a few different things could happen, pain would subside and life would continue normally, or I might begin to experience a curvature or deformation, and if the latter happens to make an appointment sooner.
I took the acetyl l-carnitine and the pain did stop and after running out of my supply two months later and thinking the worst was over, I stopped taking it.
Low and behold after a few more months go by, while attempting to be intimate with my wife, the head of my penis had about a 20 deg curvature to the right. (I am going to downplay the emotions and fears that were going through my head over the explanation of my case to save time and stick to the point, but understand, at this point I was completely freaking out...)

I made an appointment with the urologist immediately and upon review, his advice was to take the l-carnitine again and a regiment of vitamin E (maybe 1000mg 2* a day?)and his advice was after a total of 12 months or so, the physical changes should have ran their course and unfortunately their is nothing that can be done (advice that, in hindsight, I don't believe or agree with). 6 more months went by an I ran out of l-carnitine again, and stopped taking it and a few months later, the curvature became more pronounced to the right and down (approx 20 deg) but began only an inch and a half above the base of my penis.  My penis also lost a considerable amount of girth above where the bending begins (1.5" from base) and had a hourglassing affect both erect and flaccid and basically appeared like blood flow was being blocked somewhere...  Again, freaking out, as I thought the physical changes were complete by now, so I go back to my doc who tells me, "well, looks like it's still getting worse"...more "nothing you can do" speech, and he mentioned verapamil injections, and prescribed me with Trental that I have been taking ever since (last 2 yrs) and he set up an appointment for me to get an ultrasound.

At my ultrasound, I watched the screen with the tech, and he found what looked like several (10-15) white spots, very small (pin head size to largest being about a match head).  The two largest being at the base on the right side (about where my curvature and hourglass ing begins) and another at the tip, almost blocking my urethra.

2 days later the doc calls and says he reviewed it and that nothing seemed like a viable option for injections, but he would give me a script for Viagra if i thought it would help with getting and sustaining erections , that were at this point being affected slightly by physical limitations, but also psychological.  Since then I have been continuing trental and occasionally using partial doses of Viagra, and it doesn't appear that it has gotten worse, so am now just looking for anything that might work to improve my condition, and hopefully reinvigorate my intimate relationship with my wife, as that has taken a substantial hit as a result of this condition.

tomorrow I have a appt with a new dr as my previous once has retired, and am hoping to actually review my ultrasound and prescriptions with him and hopefully find a more aggressive treatment plan for the way forward.

It seems to me that my condition is different from everyone else's, as is the theme with peyronies, in that I have multiple small plaques, instead of one or two "lumps"...I will post an update after my appointment, but any red flags anyone sees in my synopsis and possible recommendations I could discuss with my new doc would be greatly appreciated.  Thank you for taking your time to read my story, and I look forward to reading all of your input and suggestions.  I apologize for any clerical errors, as I typed this on my iphone, and really didn't have a chance to elaborate, so any questions you would like answered, I am open to.  I am at a decent place with dealing with the psychological side of this disease in that I have found away to not shut out my wife and family, and keep moving forward, and am just still hoping that someday I will find something to improve the physical side.  Thank you again for your time.

-T


Jonbinspain

You need a see a Urologist, one who specialises in treating Peyronies. There is a list here on the site.

I would ask your M.D. For Cialis instead of Viagra. You can take a small dose daily - say 5mg to help maintain healthy blood flow. Using the full 20mg, if necessary for any E.D.  Hopefully, a Uro will prescribe Pentox which is considered front line treatment here. Keep taking the ALC, add CoQ10, Arginine or Citrulline Malate.

Re the curvature. VED or Traction, or both. They both have their advocates here although VED may be better in your case from what you have described.

Lastly, read all you can here. You will learn that although there is no guaranteed cure for Peyronies, it can, in most cases, be managed and improved. As far as effective treatment and management goes, it's a matter of finding what works for you personally.


King33

Thank you for your advice!  It seems the trental (which I haven't seen mentioned much if at all on this site) is what my first Urologist had prescribed for blood flow...seems a low dose Cialis regime would potentially cover that.
So, resuming ALC could still show some benefits at this point?  My experience with it, and it could be entirely coincidental, is it was working as a preventative measure, and then when I stopped taking it for any amount of time, the symptoms and condition worsened some degree...after the second "worsening" I basically was in a depressed state where I somewhat gave up, and just figured I would let it run it's course and after that urologist appointment, began the Trental, and was prescribed Viagra for occasional use...since then (approx a year and a half ago) I haven't taken any supplements.  My condition also seems that it hasn't worsened in that time frame, so maybe my uro was correct in that it "runs it's course", however it took much longer to do that then he originally had stated, which led me to incorrectly think it was OK to stop taking ALC.  

At this point, I will take any supplements I can afford to take if it could provide some help, and will research Pentox and discuss that, as well as a VED with my Dr. Today.  Hopefully my new Uro will be a little bit more proactive then my last, as my first doc was really more inclined to just tell me there was nothing I could do, and if I can get an erection, and am able to have intercourse, his recommendation is to just let it be.  If it worsened to where I could no longer have intercourse, then Verapamil injections (which he told me only have a 50% chance of showing any change, and could cause further damage) or surgery, which would be removing plaques, and I would no longer be able to get an erection without mechanical intervention...what I have read on here already leads me to believe there are certainly other options, and if my new urologist is not a specialist, hopefully I can find one in the area or within a reasonable distance that is more informed on the available treatments.  Again, thank you so much for your assistance, and for everyone who has taken the time to read my thread!  I will post later what my new uro recommends and how the check up and ultrasound review went.  

King33

So, in reading up within the forum, it appears trental is the same as pentox.  Am I correct in that assumption? So I have been taking that for the last 18 months and should continue, but should probably resume ALC and add coQ10?  My dosage is 200mg 3x daily I believe.  I will double check dosage and am going to talk to doc about adding supplements back in...

NeoV

Trental is pentox. ALCAR dosage is 2grams a day and CoQ10 is 300mg a day. You can get ALCAR very cheaply in powder form by a very reputable company. Very easy to find on major websites. Continue taking the supplements indefinitely. You're urologist is impressive. Most of us see urologists who have no idea what to prescribe us. Traction and VED are worth trying and of course low dose cialis. Alternatively you could stick with arginine or citrulline (also in powder for for cheap by same company). Another one I like for blood flow and endothelial health/NO production is pycogenol.

Welcome to the forums! :)

King33

Thanks!  I'm glad to be here.  So, I just met with my new urologist, and he said to definitely continue with the pentox (I was incorrect on dosage earlier, I am prescribed 400mg 3* daily).  I spoke with him about ALC, and he said I can resume that if I wish, and he also recommended L-Arginine and wrote a script for that (500mg 3* daily).  Regarding 5mg cialis, he recommended to just stick with the Viagra in low doses (25mg 3-4 times a week) but didn't think a daily cialis would be of any real benefit over the Viagra.  Main reason he wanted me to stick with Viagra is because my insurance covers the Viagra after some convincing, and switching to cialis might require additional convincing.  

re the VED...
He actually brought it up before I did after his exam and the review of my ultrasound (location of the plaque and downward curvature rules me out for xiaflex) so that is the next logical step.  He is talking to insurance company and VED people to figure out how to get me one of the FDA approved models.  

Basically appointment went better than expected and my doc really knew what was up with this disease.  Some background, he trained in Tampa and participated in xiaflex trials as well as performed several surgeries on peyronies patients, both minimally invasive, as well as full plaque excision and graft.  

Downside...he is back filling the position temporarily and will be relocating to Austin, TX within the next 30 days, so my follow up will be with yet another uro.  Fingers crossed, but in the meantime I will be starting VED therapy and continuing the oral medications discussed.  

james1947

King33

Ask VED for ED and not Peyronies to be easy approved. Careful with the usage.
Pentox together with low dose Cialis helps softening the plaques (see research in the library).
I am using daily Viagra 25 mg if I am running out of Cialis and for intercourse.
Hope for you that the new uro worked with the old one so they are tuned. :)

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