Peyronies disease

It is hard to talk about curvature of the penis. For one thing, the cause is often a result of trauma. That is to say, injury during sex. Who wants to tell a doctor that you have been too rambunctious in bed? Even if the cause of Peyronie’s (Pay-row-Knees) disease is unclear, it’s still difficult to discuss with a doctor. Many men suffer in silence. Peyronie’s disease can have a profound impact on a couple’s sex sex life. One young man describes his challenging situation. He is younger than average when it comes to coping with a curved penis.

Dealing with Peyronie’s Disease:

Q. I am a 21-year-old college student with an embarrassing problem. I have dated some beautiful young women, but I avoid sexual intimacy because of my “curse.”

I suffer from Peyronie’s disease. My penis curves to the left when I am aroused. Is there anything that can be done to correct this problem?

Can A Curved Penis Be Straightened?

A. We applaud you for seeking help for this condition. Many men suffer in silence.

Peyronie’s disease often occurs after some trauma to the penis. The resulting scar tissue can make the penis bend at an angle.

Imagine a long balloon. If you were to put a clamp on part of the balloon, it would curve in that direction. Fibrous plaque that develops in the penis because of trauma can trigger much the same thing in the penis.

Xiaflex (collagenase clostridium histolyticum):

The FDA has approved a medication to treat Peyronie’s disease. It contains collagenase, an enzyme that breaks down scar tissue. This injectable drug, Xiaflex, reduced penile curvature somewhat more than placebo injections.

OK, we recognize that “somewhat” is not very specific. Here are the confusing details from two clinical trials that the company used to gain FDA approval.

Actual Clinical Trial Data for Xiaflex:

The men in these studies had an average penile curvature of about 49 to 51 degrees before treatment. To put this into perspective, a right angle is 90 degrees. We’ll let your imagination determine how much of a curvature these men experienced.

After treatment with Xiaflex the improvement (measured in percentage) was -17.2% in one study and -11.4% in a second study. We’re not sure why the drug company didn’t report this in terms of degrees improvement, but rather percentage improvement. That is what we have to deal with. Not nothing, but clearly not a home run.

They also provided a “bother domain score.” This was “patient-reported bother associated with Peyronie’s disease compared with placebo.” Before treatment the baseline “bother” score was around 7.5. After treatment the score dropped by about 1.2 points in one trial and 1.1 points in another trial compared to placebo. Again something, but hardly a slam dunk improvement.

Xiaflex Side Effects Include Penile Fracture:

There are downsides to getting Xiaflex injected into the penis. Side effects may include bleeding, bruising, pain or itching. In a small number of cases the injection itself injured the penis.

Experts in this arena report (Translational Andrology and Urology, Aug. 2015): 

“Although Xiaflex is not uncomfortable to receive, some patients have significant pain for up to 48 hours after the injection, with rare patients having discomfort beyond this period.

“The main difference between Xiaflex and other injectable therapy is Xiaflex’s ability to dissolve the collagenous fibrous tissue within the plaque. However, Xiaflex also carries the risks of hematoma [bruising] and penile fracture due to thinning/softening of the tunica albuginea [elastic tissue that surrounds tubes of blood vessels].”

The official prescribing information warns that:

“Corporal rupture (penile fracture) was reported as an adverse reaction in 5 of 1044 (0.5%) XIAFLEX-treated patients in clinical studies. In other XIAFLEX-treated patients (9 of 1044; 0.9%), a combination of penile ecchymoses [blood leakage] or hematoma [bruising and swelling], sudden penile detumescence, and/or a penile “popping” sound or sensation was reported, and in these cases, a diagnosis of corporal rupture cannot be excluded. Severe penile hematoma was also reported as an adverse reaction in 39 of 1044 (3.7%) XIAFLEX-treated patients.

“Signs or symptoms that may reflect serious penile injury should be promptly evaluated to assess for corporal rupture or severe penile hematoma which may require surgical intervention.”

The Cost of Xiaflex for Peyronie’s Disease:

Xiaflex is pricey. According to an article in the New York Times (Dec. 6, 2013)

“Xiaflex costs $3,300 an injection, so a full course of eight injections would cost about $26,000, in addition to a doctor’s fee.”

Hopefully, insurance will pay for the full course of treatment. If not, this approach could be out of reach for many men.

Verapamil Injections for Peyronie’s Disease:

A far less expensive medicine is known as verapamil. It is an old generic blood pressure medicine. Verapamil injections have been used off-label to treat men with a curved penis. This approach was first reported in the medical literature in 1994 (Journal of Urology, June, 1994).  The drug softens plaque in the penis.

Researchers note (Translational Andrology and Urology, Aug. 2015) that:

“Verapamil is substantially cheaper than Xiaflex, and thus may be used when insurance coverage or other financial considerations prohibit the use of Xiaflex.”

That said, verapamil is not FDA approved for treating a curved penis. If you decide to seek this treatment, be sure to consult a urologist who has experience utilizing it.

There are other kinds of injections that are not FDA-approved but might be helpful. A specialist should be able to recommend the best treatment for you. Urologists treat some cases of Peyronie’s curvature with surgery. If Xiaflex is an option, keep in mind that some experts recommend stretching afterwards. The authors of the article in Translational Andrology and Urology state that:

“The modeling/stretching maneuver to expand/lengthen the contracture following Xiaflex injection is as important as the injection itself. Clinical trials have clearly shown that the combination of injection plus modeling has the best results in reduction of penile curvature.”

To better understand “Penile Modeling for Peyronie’s disease,” here is a link to one urology group’s description of the procedure:

Share Your Experience:

Please let other people know what it is like to deal with Peyronie’s disease. Did it go away by itself? What treatment have you used? Did Xiaflex work? Did your insurance company pay for it. Many men could benefit from your story in the comment section below.

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  1. John
    UK
    Reply

    I had it. It was bad (50 degrees). Nothing helped. My liver was almost damaged by the supplements I tried to take. There is a good blog for patients.
    I was successful by treating it with iontophoresis machine (that could be bought in the UK or Italy) and benefited greatly by the advice of an excellent doctor in Rome:
    Dr Paulis.
    From 50 to 5-10 degrees, in a cost friendly method, with no side effects and potential danger. The cure was surprisingly fast and took, in total, about a year.

  2. Buck
    Nevada
    Reply

    My experience was not due to trauma but abstention. With a new partner and Vitamin E (no way to know if this had a benefit) the issue resolved with time and vigor, though a small amount of scar (excess) tissue remains.

  3. Julu
    CA
    Reply

    I am a woman but my husband had peyronies disease. In our day there were no drugs for peyronies, at least none that were offered. His doctor told him to take vitamin D. It worked. Granted, it took about 3 months but better than $3,000.00 and the chance of side effects.

  4. David W.
    Houston
    Reply

    Is Xiaflex covered by Medicare Part D or any secondary insurance?

  5. Jere
    SC
    Reply

    Could you please address bent penis symptoms NOT resulting from trauma? This type of Peyronie’s disease seems to also be accompanied by reduced size of erection but not reduced libido.

    Thank you for any information you can provide.

  6. WILLIAM F. W.
    MS
    Reply

    Having been treated completely successfully with tamoxifen, I wonder that it doesn’t work for some others. I asked my uro about it, and he said the link was fiber–common to breast cancer and Peyronie’s disease.

  7. Cindy B.
    Seattle Washington
    Reply

    The cost of that “Xiaflex” is insane, insulting, and an absolute deal-breaker. Much worse than a curved penis.

  8. George
    Fort Worth, TX
    Reply

    I was diagnosed with Peyronie’s disease in the late 90s. Urologist stated not much he could do and that the treatment available at the time might cause impotence. Peyronie’s disease has a rare side effect of causing penile shrinkage, which I have experienced. I lost about an inch and a half during erection and loss of girth is noticeable. Just thought I’d add to the discussion.

    • tommy r.
      georgia
      Reply

      After being on a beta-blocker & a statin I acquired peyronies shrinkage and curvature. Surgery helped with curvature but not shrinkage and occasional impotence.

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