My Story - Peyronies Experience in Munich Germany

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MunichPatient1989

Hi All,

I am documenting my story and progress here. I hope it helps other users in the future to see what clinics, specialists and treatments I found in Germany. I feel that finding someone professional to talk to is really hard for Peyronies Disease.

CURRENT TODOS AND QUESTIONS
- I am starting to do some good measurements to prepare for my visit at Dr. Hatzichristodoulou in Nürnberg, Germany. Also collecting questions.
- I am considering to use RestoreX and try to find out experience from others if it works with my Peyronies shape.
- I want to understand if early surgery is better or if it is better to wait the progress of the disease until sexual intercourse is physically not possible anymore.
- I want to understand how other patients handle the psychology side of the disease. E.g. do you go for therapy and/or do you talk with close friends/family about the issue. If yes, did that help?

CONTEXT AND SYMPTOMS
- Germany (South)
- Born 1989 (34 yo)
- First symptoms in 2021 (32 yo)
- Office worker, a bit stressed by work
- Normal BMI
- Low physical activity
- Low blood preassure
- Good blood marker except low Vitamin D,  moderately low HDL cholesterol and moderately high triglycerides
- Average levels of testosterone
- Knot behind the glans under the skin between the cavernous body (c.a. 2x1.5cm)
- Dent behind the glans during erection
- Upward curvature (c.a. 30) at the dent with a slight bent to the left (c.a. 5-10°), difficult to measure
- Noticeable shortening of the erected penis (I have no reference measurements)
- No visual changes of flaccid penis
- Erectile Dysfunction, very weak, only partial erection possible without medication
- Sexual Intercourse possible with Tadalafil 5mg (c.a. 1x per week), still upper part and glans is not as strong erected as it was before my Erectile Dysfunction & Peyronie's
- Oral hyposensibilization medication (daily Grazax)
- Vitamin D (1000se daily), Vitamin B12 and Myoinositol (500mg every other day) supplements
- My father had Morbus Dupuytren's and Morbus Lederhose and potentially Peyronie's Disease (already deceased so I can't confirm Peyronie's) wich could be related and genetically inherited to me

STORY
- In 2020/2021 I started to get Erectile Dysfunction. I am not sure about the real cause, but I expect it was due to multiple reasons. I became a father right at the time COVID lockdown started in Germany, my wife changed behaviour after becoming a mother (I guess hormonal change), I changed my job and felt stressed and had little opportunity for vacation or similar due to lockdown. Therefore I started to have weaker errections during sexual intercourse. Other changes were that I had COVID and COVID vaccination and that I started oral hyposensibilization therapy with "Grazax" for hayfever.
- End of 2021 I started to feel a tiny knot behind my glans, at the upper side of the shaft, right between my cavernous body.
- I went to an Urologist in November 2021. The Urologist said that it most likely is Peyronie's Disease. She further said that the diseases symptoms are small and therefore I should just wait and see how it develops. Medical examination mostly consisted of ultrasound and check of Testosterone (good values). She told me that there is no indication that COVID/vaccination is a cause for Peyronie's.
- I received Sildenafil for my Erectile Dysfunction. Using Sildenafil allowed me to get a reliable erection, but I started to realise that the upper part of my penis and glans did not receive a similar strong erection than my lower shaft.
- Early 2022 I realized further symptoms. I started to have pain during erections and I have started to see a progressive increase in dent and curvature at the position of the knot. The curve is upwards and slight to the left.
- Therefore I went back to the Urologist and she sent me to a special "Peyronie's clinic" in Großhadern Clinic in Munich.
- While waiting c.a. 4 Months for this appointment I have seen a progressive increase in dent and curvature and was only able to perform sexual intercourse with my wife with Sildenafil. I also began to read studies of medical treatment and only found hope in one that recommended Tadalafil.
- The "Peyronie's Disease clinic" did a ultrasonic examination of the flaccid penis and have identified some calcification of the plaque. Therefore they said that I have a typical form of Peyronie's Disease, except that it started at a younger age compared to the average. I tried to ask them many questions about what I can do now to help treatment, but the only option I received was that once the progression of the dent and curvature stops for 6 month I should come back to discuss options for surgery. They prescribed me Tadalafil after I referenced the study.
- I started to take Tadalafil daily, but I did not see a difference in form and errection compared to Sildenafil. I think it reduced my pain during erection, but this could also be due to the natural progression of the disease. With Tadalafil I started to experience nightly errections. Therefore I started to reduce Tadalafil to once a week c.a. 2-4 hours before expected sexual intercourse. Tadalafil for me is better compared to Sildenafil as it allows more spontaneity (effect lasts 1-3 days, e.g. lasts a full weekend). Also I started some physical workout activities (20 min circle training most mornings) and worked on improving my sleep, this had an impact on my general well-being and therefore also my erections. Also my sexual intercourse improved after my wife stopped breastfeeding end of 2022 which changed her behaviour again (imho introduced by the hormonal change) and started to become more interested in sexual intercourse again.
- I made peace with the disease and accept that I can't heal it. I am happy as long as I am physically ok to have sexual intercourse. I will update the post when I make progress.
35 yo, first symptoms 2021 (32 yo)
ED, bottleneck dent, right behind glans, shortening
Plaque calcification
5 mg Tadalafil 1-2/week
-.- new plaque appeared on right side of shaft