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Author Topic: Dissatisfaction with regards to peyronie's disease treatment from urologists  (Read 986 times)

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Werther

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It looks like that, at least in Europe, "Around one-third of experts and, from their perspective, around two-thirds of patients are dissatisfied with the currently available Peyronies Disease treatment options".

This is what emerged from a survery conducted by the European Society of Sexual Medicine directed to more than 400 specialists based in Europe (here is the link: https://www.ncbi.nlm.nih.gov/pubmed/31103483).

Being on this and other peyronie's related forums for awhile, it looks like lots and lots of sufferers are mostly dissatisfied with the urologists they come across with. However this paper highlights the fact that urologists are probably well aware of these feelings and they feel themselvels too that current options are less than optimal for this damned disease.

In my opinion this - or something similar - could maybe represent the beginning of a real doctor-patient alliance that could actually solicit the public, the media and the medical community with the aim to develop better interventions for this problem.

What do you think about this?
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MarkDS

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Anything that highlights the disease and improves the available treatment, is always welcome.
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Peyronie’s started 3 years ago, resulting in upward curve of around 100 degrees.  Tried VED before opting for incision and grafting surgery in June 2019.  Resulted in loss of length of over 1 inch, and residual curve of over 40 degrees.

Hawk

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There is a survey in the U.S. over a decade old that indicates the lack of knowledge by most urologists.

In our early first few years, we were pushing to partnership with doctors, media, and others.  We had some good contacts in government and media but the assigned volunteers here at the PDS slowly dropped out and disappeared.  They were dynamic and gifted but were flashes in the pan so to speak.  They burned out before things started really rolling.  That has been my challenge since our founding.  Finding individuals with skill, commitment, and time.  It is a very tough combination to find.  Without all three factors they are of little help.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

james1947

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As someone that is here for the last 10 years, I will second Hawk
Very difficult to find skilled and dedicated members that have the time for such a project.

For even much smaller projects can't find volunteers.

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

Alibaba

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You asked an opinion and I am FULL of opinions!  ;D ::)
I have been through many urologists trying to deal with e.d..  Same people you deal with about your peyronies.  1/3rd are hung up on 1 concept of treatment. 1/3rd are selling a product that some of them even own.  1/3rd may have been born idiots and remained that way through the years of drunken parties in school. Whatever remains......gasp......... are damn good at what they do and care that the concerns you have are addressed too.  Too many urologists are inexperienced or stuck on treatments they learned in med school back in 1947.   I have advocated many times and still insist that if you are not happy with your doctor, fire his ass and find another.  I did that 15 times till I got an implant and did it again after I got it to get one worth keeping in my body.  Make sure you voice your issues, concerns and expectations when you see the doctor. If you are not comfortable with all you here, move on.  If he won't discuss them with you, certainly move on. Be realistic. Do not expect him or her to turn a tadpole into a shark or to make you an instant F^@$!ng machine despite no-one will go on a date with you.  Set reasonable goals and do not give up. RESEARCH, then research more to see if what you read is fact, sales hype, or the word of an idiot that does not know good from bad nor even cares. Having fallen in all those traps at one time or another being so anxious to get a fix, I know they are there. Cheers everyone.
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Milam 1/13/16-LGX 21cm - BAD service & surgical outcome Hated infrapubic.
Kramer revision 3/1/17 Titan 22cm + 1.5 cm extenders

Werther

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There is a survey in the U.S. over a decade old that indicates the lack of knowledge by most urologists.

It's nothing more than discouraging finding out that, after more than ten years, even outiside of the U.S., very little has changed.

I don't know what might be useful but that should be the goal of this topic: finding out a way to act together - patients and urologists - in order to find better solutions (or compromises) to the problem. Based on the abovementioned paper and the other one you mentioned it should be in everybody's best interest to find better answers, shouldn't it?

@Alibaba: I quote your words one by one. Anyhow let me say that what you're talkig about - sadly - is easier said than done.
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Alibaba

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I agree.  Most urologists are an odd lot and hard to find a well rounded one that we can deal with. At least it is not a fear issue like H.I.V. was and still is to a small extent now. 30 years into this epidemic and as recent as 8 years ago I am aware of and has happened to people I know, the hospital would isolate patients in a hall to themselves with big signs that say HIV taped the walls and door. I've had doctors who would stand in the hall and not step in the room to discuss lab tests and many doctors refuse to treat. 2 years ago, I even had a doctor refuse to give me a physical for the implant with Dr. Kramer and had to drive 2 hours to St. Louis for a physical.   Stay persistent. That is how I found dentists and dermatologists to treat people with H.I.V.  Spend time explaining the issues and treatment options. Some may listen, some won't but never give up and always name names so others do not go through poor treatments or despair from ill mannered ill informed non caring doctors. Cheers buddy.
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Milam 1/13/16-LGX 21cm - BAD service & surgical outcome Hated infrapubic.
Kramer revision 3/1/17 Titan 22cm + 1.5 cm extenders

TDix

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Dr Yafi is willing to be a part of our community.  I don’t know if he would register here or not as he is a very busy andrologist but he is open to answering anything we want to throw at him
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46 yrs old, 3 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein or fracture at tip, excision/grafting surgery March 26th successfully performed by Dr Faysal Yafi, pelvic floor therapy with Laureen McVickers

Hawk

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Thanks TDix I am drafting an email to him.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums
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