This article is helpful to let men know that there are treatments that can help. At our men's clinic in Chicago, we see that there is not one treatment that works best for most men. Seeking treatment sooner tends to get better results. The longer a man waits to get help, the worse it tends to get and the more common it is for erectile dysfunction to set in. I would add that vitamin E alone does not work and acoustic wave treatment is worth looking into. It is extremely effective for relieving the pain associated with Peyronie's. mensperformanceclinic.com/peyronies-disease-treatment/
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This is the best sentence in this article: "Although insurance coverage has long been hard to come by..."
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Xiaflex is not a new option for this disease. It's promise has come and gone. This article feels 4 years behind the curve, as it were.
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@Mark,
Even though the use of the drug isn't brand new for this purpose, it's only a few years old, and doctors are still -- ahem -- working the kinks out. The drug is FDA approved for Peyronie's, and has been successful in treating many cases, but as with any new drug or procedure, more information comes to light as they are used (efficacy, side-effects, long-term results, etc.). It's good to check in on these things. Jane provides a valuable service to many readers, particularly older ones, since she is elderly. She is basically saying, "Here is information. There are options." That said, I would never personally take advice from her. Remember her 1980 book "THE GOOD FOOD BOOK - Living The High Carbohydrate Way" ?
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Peyronie's and Dupuytren's are both linked to inflammatory foods like dairy, and processing foods which creates AGEs particles (and have been shown to be present in the plaques) - Advanced Glycolyzation Endproducts.
Earing a diet high in fresh, cooked vegetables might prevent or cure these conditions.
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Mmm, Alexa you seem to be confused.
If the issue is plaque related like that of general ED, yes - most men can get it up and keep it up if they take care of themselves but Peyronie’s is most often attributed with trauma and subsequent scarring and the scar tissue that develops internally from that trauma.
I find it incredibly irresponsible for a “MD” to push the mantra of “just eat better” and you’ll never have a medical issue that needs treatment for a disease that gets worse and worse and worse over time and often can’t be corrected.
This disease is not about the build of plaque be rather the scar tissue that develops in erectile tissue.
Deeply offended and concerned for your patients.
No mention of the use of L-Arginine and Carnitine here. Went to a urologist within a year of symptoms surfacing, but with significant curvature (>40%). He ran over the surgery, injections and pump options, and provided information on the use of arginine and carnitine, explaining that while not proven, there had been anecdotal support. Worked pretty quickly for me, with little curvature left and subjectively back to 85-90% with no side effects.
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@Chris hi Chris, do you mean just taking supplement Arginine and carnitine? Or was it some sort of cream or injection?
Why aren't readers informed Xiaflex also FDA-approved for Dupuytren’s?
>"Heredity and certain connective tissue disorders like Dupuytren’s contractures increase the risk of developing Peyronie’s."
No established causation, so far as I know, as opposed to association/shared risks.
Readers aren't informed how bad the condition must be to warrant treatment. Beyond that Medicare generally covers treatment only in cases in which curvature >30%.
What about in cases where patient meets criteria for Dupuytren's treatment yet associated Peyronie's <30% curvature?
We read Peyronie's "usually the result of AN injury" (my caps). Readers aren't informed that Peyronie's, like Dupuytrens, can also reportedly result from reactions to some meds or to SEVERAL 'microtraumas.'
We read condition can impact "both straight and gay men." Are we to pretend bisexual men don't exist?
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Great article!! I know how hard is to suffer from this disease.
In my case I visisted a few doctors but the only alternatives I was offered were surgery, verapamil injections and the extender. I was totally against having a surgery because of its later-on consequences, the Xiaflex injectios of are too expensive and I couldn't afford it a so finally I took the Andropenis alternative. At the begining I didn't trust this device and I addmit that it was a bit hard to follow the treatment for me due to mydaily duties but finally I got the way to wear the device accorind to the instrucitons provided by the device company. Actually I was prescribed a version of Andropenis extender called Andropeyronie and after aa few months my penis finally become almost straight again. Now I feel as I used to be since during long time it was hard to enjoy my "privacy". I highly reccomend the extender for those who cannot afford the injections and need a really effective treatment. Best Regards
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One of our former POTUS who is still living has this condition. Why not approach him to see if he would do the Bob Dole routine. It would be worth a try.
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To the writer of this article,
”sexual intercourse difficult or impossible for both straight and gay men.”
Last I checked we are MEN. Why the need to bring in sexuality into it?
If a man has this condition, his sexuality is an irrelevant matter. This is a Men’s Health issue, and it should never be sexualized.
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@Adrian The biomechanics are quite different, according to my son, an expert in disabilities and sexuality, and a person who has had direct personal experience of both.
(He also speaks on compassion and the importance of not jumping to conclusions in an age that seems to cultivate its aggrievements.)
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@Adrian
It is also an important detail to mention due to the shame/guilt placed on individuals by society and those who do not comprehend the pathogenesis of the disease (i.e., "Peyronie's disease only occurs on homosexuals due to the acts of sodomy they partake in").
Great article that provides a good overview. I would add there is a site called Pyronies Disease Society that has terrific information from around the world about treatment,referral and most importantly physiological support. If anyone doubts the need for mental health support spend an hour reading the submissions. I might add there is an area on the site for the partners of afflicted patients.
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I was part of the Phase-3 trials, and was "cured." However, you really really really need to find an experienced doctor to do the injections. There have been, I am told, some nasty "side effects" from treatment not properly administered. Also it is really important to do the physical manipulations that are part of the process!! The drug alone will not cure the problem. Treatment here is a process. It is not "get a shot" and await things to happen. It will not work if you do not engage in the entire procedural process for a cure.
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Don Cummings is right up there with Jeff Bezos for bravery!
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Can we now talk about tilted uteri and how painful that can be?
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Sex after Peyronie's is still possible, I'm living proof. Get checked out early if you sense something is wrong. Thanks for covering this, Jane Brody. Look forward to reading "Bent But Not Broken."
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Thank you, Jane Brody, for providing a valuable Public Health Service.
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Not to be a negative Nancy, but here we see a men’s sexual health disorder with an expensive treatment that is nonetheless covered by insurance including Medicare (as it should be!). Over in my clinic I have hundreds of women with gynecological problems with inexpensive treatment, but coverage can be limited by the “deeply held religious beliefs” of an entity (corporation) that exists only on paper.
Nothing to see here, folks. Carry on.
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@Caitlin When I read this piece, I, too, thought of how fortunate the male patients were to have coverage, while females have their coverage limited. Worse still, it's a bunch of males who determine the limitation.
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@A
Instead of celebrating a humane policy which benefits both men and their female partners?
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@A I would question that it is a "bunch of men" who take advantage of the ludicrous religious or philosophical exception. There is no evidence to support the assertion that women are not also involved in impacting others by their absurd and often false claim of an exception or exemption. Got evidence to the contrary? Well then publish it.
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The author deserves credit for explaining a sensitive issue and its treatment. Wading into the waters of anything to do with sex is rare in the health section. It signals a greater willingness to address issues beyond the most commonly discussed issues. I hope to see more such departures from the routine fare.
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