Peyronies Society Forums

Read This First => Introduce Yourself => Topic started by: damnthatdent on January 09, 2022, 06:21:45 AM

Title: Peyronies with 28. EWST when no problems ??
Post by: damnthatdent on January 09, 2022, 06:21:45 AM
Hello everybody,

I'm here because I got diagnosed with Peyronies. I realised a small knot in the septum, pretty much below the glans end of November 2021. At first the doctor could not see anything on the ultrasound, so he prescribed antbiotics and ibuprofen to rule anything else out. Now I'm taking Potbaba since 1 1/2 weeks, because it did not disappear. I went to a new doc to get a second opinion. This one now found that its already calcified and also showed it to me. So quickly ???? He said it must be older, but I for sure can rule that out. The spot is so easy to feel in the flaccid penis, I would have realised. The new doctor suggested now to do EWST to stop progression. But I do not really have any issues right, so I'm hesitant because I'm worried it will make it worse. Right now I might have small dent when erected, but I can't say for sure its not visible, can only feel it, but so small it could have been there all my life. Any advise would be helpful, I'm super scared it will get worse and want to stop the disease.Second doc told me tadalafil is only increasing blood flow and no help when already calcified. I should keep this bullet in case I get Erectile Dysfunction.  :'( I just don't know what to do. I have a slight Erectile Dysfunction since that doctors appointment, but more because I'm so down and always think about it when I'm getting an erection. Is there anyone who was able to stop Peyronies Disease in that state? Can you recommend EWST? No progression would be an amazing result, I just don't want it to get worse with shockwave therapy.
Title: Re: Peyronies with 28. EWST when no problems ??
Post by: blex on January 09, 2022, 07:47:34 AM
Hello,

sounds similar to my symptoms, but without the pain.
Also had that quick calcification in a septal scar.

ESWT shows success in studies, but experiences from members here have been poor.
Consensus seems to be that it likely wont hurt, but is useful mostly with pain only.
In Germany Dr. Porst and the Urologie am Ring in Cologne are advocates of this technique (former has a website, latter some Youtube Videos about this).

Potaba has almost zero science behind it, Tadalafil seems to be first line when it comes to stopping progress.
Title: Re: Peyronies with 28. EWST when no problems ??
Post by: RichardWilson99 on January 09, 2022, 08:37:39 AM
Hi damnthatdent,

When you say you have a knot, is this a protruding (comes out) hard piece of tissue?  How are you diagnosed with peyronies if you don't have curvature? Did you get tests done to test for calcification? In many cases, especially when we are younger, your penis will heal if you can give it the proper treatment and lay off injuring it further.  This will include: 1) getting as many erections as possible    2) Stretching out any damaged tissue  3) Staying healthy both physically and mentally to reduce inflammation.

Have you tried looking at starting the regimen in the survival's guide?
Title: Re: Peyronies with 28. EWST when no problems ??
Post by: damnthatdent on January 09, 2022, 09:08:40 AM
Hey,

thank you very much for the quick responses. @blex sounds similar yes, how are you doing so far, is the progression stopping for you? Did you ask for tadalafil specifically?  I did do a lot of masturbation and probably a bit too much squeezing (ran out of lubricant and circumcised) the day before the knot appeared, but nothing that hurt or anything, maybe that was the cause ? But the doctors said thats very unlikely.
Currently, I want to wait with ESWT for an appointment with a specialist in Nürnberg, but I have to wait until end of February, but kind of afraid I'm missing an opportunity. There is one study that found adverse effects done by him an, but they were not statically significant ("Extracorporeal shock wave therapy in Peyronie's disease: results of a placebo-controlled, prospective, randomized, single-blind study")
@RichardWilson99
I was diagnosed by the two doctors. The first one just by feeling the knot. He did not find calcification. But the second one felt the knot and found the calcification on the ultrasound. He said thats pretty much the clear diagnosis when you find a calcification. I read the survival guide and did the measurements. All seems fine I still have my normal round about 17,5 cm length. Regarding stretching I'm unsure how to stretch since there is no curve, just straight ? 
Title: Re: Peyronies with 28. EWST when no problems ??
Post by: blex on January 09, 2022, 10:50:37 AM
Not sure about progress, I found a second very small nodule recently, but that couldve been there from the beginning.
Had to ask for tadalafil, doctors so far were not helpful (first two didnt even look, third found calcification, but said to wait a year before anything, fourth said its not calcified)
Visiting a specialist in february too, I dont think you are missing out, you caught this early.

You can have peyronies, or rather a peyronies-like scar without bent, and calcification can come quite fast.

Title: Re: Peyronies with 28. EWST when no problems ??
Post by: damnthatdent on January 09, 2022, 11:16:14 AM
I see. Thanks for the response. May ask which expert you are going to? I also have an other appointment at the University in Munich. Hoping that someone can help. I will ask tomorrow if someone is willing to prescribe me tadalafil. I will keep the results of the visits posted, maybe there is some common approaches we can spot from different experts for that sort of "form" of peyronies. I did a rough literature review on pubmed the last two weeks (as much as you can do that as a non professional), but its super frustrating the results are contradicting, overall the lack of quality studies and data. Most of them actually only include curves, because the wanna show improvement in the end.
ESWT is a great example you can find papers that suggest great results, no results and even worseing the condition. So I can understand that as a doctor you don't know what to do.
Title: Re: Peyronies with 28. EWST when no problems ??
Post by: Gerald12345 on January 09, 2022, 11:29:34 AM
I have almost the same symptoms like you have. I have two plaques right under the glans, symmetrically placed at the end of both cavernous bodies. No pain other than a tingling feeling. Still don't know whether I have Peyronie's, two doctors said it might rather be a normal scar from having rough sex. You can order Tadalafil easily online via an Online-Rezept. That's how I got Tadalafil.
Title: Re: Peyronies with 28. EWST when no problems ??
Post by: projectpd on January 09, 2022, 12:05:01 PM
@damnthatdent
That’s the study by Georgios Hatzichristodoulos, whose conclusions were that ESWT “cannot be recommended. “
It seems very surprising therefore that he is performing it!

“Despite some potential benefit of ESWT in regard to pain reduction, it should be emphasized that pain usually resolves spontaneously with time. Given this and the fact that deviation may worsen with ESWT, this treatment cannot be recommended. “

Did you get the full text? The abstract doesn’t make any statements about significance of the hypothesis that the treatment made anything worse.

Of course it is not encouraging to read. It was mentioned in a critical way in a paper summarising ESWT, eg for publishing 9 years after the study, and possibly not using an appropriate energy flow, but still.
Title: Re: Peyronies with 28. EWST when no problems ??
Post by: damnthatdent on January 09, 2022, 12:48:29 PM
Sorry it was confusing the way I explained it. The doctor I last saw recommended it. I have my appointment with Dr. Georgios Hatzichristodoulos end of February, so thats why I'm thinking maybe I should wait and talk to him what is opinion is now, if its save to use, but he recently stressed again that their might be adverse effects (https://www.springermedizin.de/dgu-2021/anomalien-der-genitalorgane/eswt-bei-induratio-penis-plastica---was-gibt-es-neues-/19718876) in some cases. Its only a comment not a study and in german. Also hard to access if you don't have a springer account. The thing that I'm worried about is that I will miss an opportunity at the moment, because some papers suggest the earlier the better.
I was not able to access the full paper of the original study, but I read a comment about it that mentioned that the p-value was not significant. Let me see if I can dig it up again.

Edit:
Check the abstract results. True the p-value is only mentioned into the other direction
"Overall, only 45 patients experienced pain at baseline. In the subgroup analysis of these patients, pain decreased in 17/20 (85.0%) patients in the ESWT group and 12/25 (48.0%) patients in the placebo group (P = 0.013, relative risk [RR] = 0.29, 95% confidence interval: 0.09–0.87). Penile deviation was not reduced by ESWT (P = 0.66) but worsened in 20/50 (40%) and 12/49 (24.5%) patients of the ESWT and placebo-group, respectively (P = 0.133). Plaque size reduction was not different between the two groups (P = 0.33). Additional, plaque size increased in five patients (10.9%) of the ESWT group only"
Title: Re: Peyronies with 28. EWST when no problems ??
Post by: projectpd on January 09, 2022, 01:08:10 PM
That seems quite a change! But, it does read as if there must have been some preceding negative about it, though, that wasn’t included in the comment. 
Title: Re: Peyronies with 28. EWST when no problems ??
Post by: blex on January 10, 2022, 03:53:55 AM
May ask which expert you are going to? I also have an other appointment at the University in Munich. Hoping that someone can help. I will ask tomorrow if someone is willing to prescribe me tadalafil. I will keep the results of the visits posted, maybe there is some common approaches we can spot from different experts for that sort of "form" of peyronies.

I'm going to visist Dr. Birkhahn in Cologne, who has some videos about IPP on Youtube.
He seems to have more knowledge than the "garden variety" urologist.

Please keep us updated!
Title: Re: Peyronies with 28. EWST when no problems ??
Post by: Hawk on January 10, 2022, 02:54:50 PM
As the name suggests, the introductory board is to give us a place to introduce ourselves to the forum.

* Everyone gets one topic on this board

* The topics on this board are locked after 10 posts. This topic is now locked.

You are encouraged to continue the conversation by posting on other boards in the main form below.
Best Wishes!