Diagnosed with Peyronie's - Searching for Peyronies Disease Expert in Germany

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MunichPatient1989

Hi everyone,

I was diagnosed with Peyronie's and happy to exchange experience on this forum.

KR
T.

I AM HAPPY FOR ADVICE ON
- I am searching for a good medical practicioner expert for Peyronie's in south of Germany (ideally close to Munich) who can really help me with understanding options before surgery. Also I want a practicioner that I can trust when he recommends surgery.
- I am searching a medical practicioner in south of Germany who has a good track record for Peyronie's/IPP surgeries, so that I already have an address in case it becomes relevant.
- I am having a hard time to measure the progress of the disease to understand when the progress stopped.
- 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
- ED, 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 ED & 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 ED. 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 ED. 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.
34 yo, first symptoms 2021 (32 yo)
ED, dent, shortening, 30° up, 10° left, right behind glans
Plaque calcification
5 mg Tadalafil 1-2/week

blex

Hi,

I can recommend Dr. Hatzichristodoulou in Nuremberg. Should not be to far from you.
He is one of the most experienced peyronie surgeons in Germany and maybe even Europe.
Also did a lot of studies on the disease, co-authered the ESSM guidelines.

His staff is also very kind, just do not expect any miracles...
36 years old, married
---
Symptoms since trauma in July 21:
First calcified nodule in septum near glans
Multiple calcified plaques developed on top
Pain (flaccid/erect), 75° upwards curvature, hourglassing
---
Nothing helped, looking for surgery now

Mikel7

Welcome MunichPatient to the forum. If you have not done so you need to read the survival guide -->https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057 . This will give you more info regarding peyronies and it's treatments.

You should look into VED therapy and possible traction therapy to slow down any more lost  length/size. Have you gotten a baseline measurement of your penis to see where your erection and flaccid lengths are at currently?  Peyronies has stages that can change from acute to chronic and then back to acute again. Pain and deformity are indicators of this.

Cialis can help you with inflammation and erections and can help slow down the progression of peyronies. A peyronies specialist can be of some value but realize that you as the patient need to be educated about this as well. Read the forum and you will get more info from other members about it.
You must also address the psychological component of peyronies. When it comes to something as personal as our penises getting damaged it will impact you somewhat. You need to get a good hold on your thoughts and get a game plan regarding your treatment. This is a marathon race and not a psrint when it comes to combating this.  Approach things sensibly and clearly. If you are in pain then you should be very careful with sex and masturbation. Also sharing this with your wife can relieve a lot of the mental stress that goes with it. If you have to have counseling or meds for depression then don't hesitate seeking treatment. You have found the best forum on the internet with a lot of great members who have opened up their lives about this dreaded disease and how they are coping. Don't get discouraged!  Mikel7 :)
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

Gerald12345

Hi to another fellow from Germany,

my story ist quite similar to yours. My symptoms also started shortly after the COVID vaccine. I have two plaques behind the glans and have weaker erections. My treatment is TRT plus low dose tadalafil 2.5 - 5 mg per day. I don't think a specialist can do very much for our condition. I for myself decided to just keep the current treatment and do nothing else. If ED worsens and pills don't work, I'll get an implant.
Peyronie's onset in 11/2021. Age 39
Two plaques under the glans. Minimal pain, only congenital curvature.
Tadalafil 2.5 - 5 mg per day + TRT

MunichPatient1989

Thank you for first guidance. I scheduled an appointment with Dr. Hatzichristodoulou in Mai and I am starting to read the forum to see what I can do.
34 yo, first symptoms 2021 (32 yo)
ED, dent, shortening, 30° up, 10° left, right behind glans
Plaque calcification
5 mg Tadalafil 1-2/week