How to help my Peyronies disease that started after using Propecia for 14 years?

Dr Herazy,  I appreciate the work with Peyronies disease you have done and are doing. I have read your newsletters with great interest over the past year or so. I would love to get your opinion when you have time.

I have Peyronie's disease or what has been diagnosed as Peyronies disease due to the upward curve. However, mine appeared rather spontaneously. I had no injury. I have no pain. The curve does not seem to be changing (for the better or worse).

I read somewhere on the internet there appears to be a link between Propecia & Peyronies. I suspect mine might be similarly related as I took Propecia daily from '97? (or whenever it was approved as a “hair loss” preventive measure) until 2012 when I read of the possible connection.

Have you heard of this? If so, would Peyronie's treatment be the same?

I can feel a mass about the size of a dime—it feels like it does not go very deep—I mentally picture something as thick as a nickle although that may not be correct.

Things I've done:
Called my Doc May/June 2011 (as soon as I noticed)—referred me to a urologist
Saw the urologist—referred me to a specialist in VA Beach
Saw the Peyronies specialist in Nov 2011—prescribed Potaba, Vitamin E, L-Carnitine, & Cialis

Still taking all but the Potaba

May/June 2012 –Saw a specialist @ Johns Hopkins—-had not heard of any connection between Propecia & Peyronie's disease — said to come back whenever it reached the point of preventing intercourse & they would be glad to do surgery

August 2012–Saw a Peyronies specialist @ Mayo (liked him much more)—he said there wasn't much that could be done differently than I was doing except maybe try a vacuum pump—-I've tried but w/ no success

Any suggestions for what I can do to help my Peyronie's disease would be appreciated.

Thanks

Jim

Greetings Jim,

The Peyronie's disease specialist who was unaware of a connection between Propecia and Peyronies is either sadly unaware if what is going on in the world, or just did not want to spend the time to talk to you about the mounting evidence against Propecia in regard to Peyronie's disease and several other health problems.  For information that might be of interest to you please read Another case of Propecia and Peyronie’s disease.  In the absence of known trauma and known genetic predisposition, Propecia (finasteride) causation is an interesting possibility to consider.

If you do indeed have a case of Peyronies disease caused by Propecia the natural treatment would be essentially the same as for cases caused by trauma or other chemical causation. 

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I suggest that you consider trying to increase your natural ability to heal and correct the damage done to you that resulted in a Peyronies scar.  From my experience the more aggressive and consistent the treatment, when guided by the response of the scar structure to your therapy plan, the more likely you will help your body to heal.   A good place to start reading is How to start Peyronie's disease treatment.  TRH

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Another case of Propecia and Peyronie's disease

Hello. I recently was diagnosed with Peyronies. I'm a 33 year old and if i had to guess i acquired my Peyronies from taking Propecia since i was 17. I am pretty sure my only ED issue is that the scar tissue is on both sides and as such i do not have any curvature yet, however it does appear to make a bottle shaped erection with very little blood to the glands. Freakish to look at.

I have three questions.
1.My urologist said don't do anything. Just wait and see. In the meantime take aspirin and Cialis. Is this really a treatment plan? I have a second opinion in October with someone who is supposed to be more of an expert at the Cleveland Clinic, but i am worried following the first protocol could make things worse. Should i stop this treatment until then?
2. The Propecia also caused lower testosterone, per my primary care doctor. They have put me on testosterone and a substance called sermorelin, a growth hormone booster. Will either of these impact Peyronies negatively or positively?
3. Should i avoid intercourse and masturbation to help things heal? Does massage make sense?

Thank you.Turns out Propecia's side effects are nastier and more permanent than expected.

Greetings,

You are right: Propecia is nasty stuff. It seems that every week I discover a few more men whose Peyronie's disease seems to have started with use of Propecia. If you would take the time to research this topic you would see that Propecia is the focus of many lawsuits, several of which involve Peyronie's disease.

For many years it was maintained that Peyronie's disease is a condition that starts in the mid-50s for most men. Sadly, I am seeing a trend that PD affects men much earlier in life because of things like Propecia and Viagra, Cialis and Levitra, as well as many of the statin cholesterol lowering drugs, as well as the insane use of mechanical penis stretching devices that abuse the delicate penis tissues.

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You do not ask any questions about Peyronie's treatment, perhaps because you mention that you do not have a curved penis. Many men take the short-sighted view that if their PD does not cause a bent penis and intercourse is still possible, no treatment is necessary since they assume their problem will stay that way. They do not realize that Peyronies is not a static problem; that it can and often does change, sometimes dramatically. I caution you to take your problem seriously even though you are not currently curved.

Your urologist is giving you the standard wait and see line about Peyronies treatment. Basically he wants to see if your problem will clear up on its own, or if he can convince you to have surgery. In my opinion it is a waste of valuable time and opportunity to not treat Peyronie's disease as early as possible. All we are doing with the treatment approach you see on this website is to promote and support the natural healing process that your urologist acknowledges takes place in half of the cases of PD. I predict that the second opinion you will receive from the Cleveland Clinic will not differ greatly, present a better treatment option or offer deeper insight than what you learned locally.

There is nothing wrong with engaging in sexual activity even though you have Peyronie's disease if you are careful to not re-injure yourself. I have written extensively on this subject elsewhere on this website. Massage is not a viable treatment option in the way I think you have in mind; I have not seen standard massage to assist this problem except where applied to increase lymphatic drainage of the pelvic area. The technique for this is described in the PDI CD, “Peyronie's Disease Massage and Exercise.” TRH


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