My doctors say there is no cure!

[raul74]

It started 6 months ago that I (39 years) detected a hardly noticable dent on the lower left side of my penis. I didn't worry too much but as this condition persisted I decided to see a doctor.
Only by telling him the symptom he immediately said Peyronies. He also said there is no cure, didn't even mention Potaba, which is (as I found out later) the only approved drug for Peyronies Disease here in Germany. After examining my penis by palpating and ultra-sound he found no plaques. He suggested I should come again in three months. (Interesting suggestion. Why should I come if there was no cure?)

At home I looked into Peyronies Disease on the internet and what I've found out was a shock. Ever since it's like living in a neverending nightmare. (Noteworthy information: After the diagnosis the Peyronies Disease has progressed significantly. First it was a small dent for a couple of month, now within four weeks there is a very noticable bottleneck and a bending of 10 degrees )

So I went to another doctor three weeks later for a prescription of Potaba. He said that it was useless(!). Also no mentioning of Pentox or any other drug or suggestion for that matter. He examined my penis but couldn't find any hardening (plaques). Then he looked at the picture I made beforehand where you can see a slight curve to the left and a bottleneck, but he said that he couldn't even diagnose Peyronies Disease on the basis of the given symptoms. I shouldn't worry, if it was Peyronies Disease there was nothing one could do about it. In the end only surgery would solve the problem(!). So he did not prescribe me Potaba.

After reading more on Peyronies Disease on the internet and especially on this forum it seems ridiculous what these doctors told me. So I decided to seek help from you.

Adding to the mentioned symptoms (bottleneck, bending of 10 degrees, but no plaque) I noticed for a few days now that my penis will not get flaccid 100%. Is that another symptom of Peyronies Disease?

So what can I do? Of course I've read some posts here but according to my symptoms, what would be the best way to proceed? I mean I have no plaques so far and I forgot to mention, no pain either. Is Potaba or Pentox only useful when you already have plaques? Can I get a prescription for Pentox here in Germany?

Tomorrow I'm going to see a third doctor. I want a prescription for Potaba. Should I ask for anything else?


Edit: My native language is not English. I said bottleneck but don't now if it's the right word. I also read the term "hourglass". What I'm trying to say is, that during erection my penis looks like it's corded up on the lower left side (nothing on the right side) with a bending to the left side.

[Old Man]

raul74:

Sorry to hear that you have had such a bad time getting any good diagnosis for your presented symptoms to several doctors. Most regular family doctors as well as most urologists do not know enough about Peyronies Disease (Peyronies Disease) to properly diagnose it.

I suggest that you do more research here on the main forum by typing in any word that you want to know more about in the search link on the home page. For instance you can type in the word Potaba in the search link block and it will bring many posts relating to that word. Therefore, you can see what other members experience with that drug has been and you can act accordingly from their help.

I am sure that you will many return posts in answer to yours, so be patient and see what happens.

Old Man

[jbvertigo]

I too was told there is no cure.  SUCKS to be us, eh?   A few months ago I was diagnosed with this dreadful disease.  I have fought cancer, vertigo, severe arthritis and now I have to deal with this.  In so many ways this is scarrier then cancer and vertigo.  I think we all want to hear the words, oh no problem, take a few doses of this miracle drug and it will be over in a few weeks.  Here is my take on this forum and I hope I am not hurting anyone's feelings.  I find this sight to be overwhelming.  Sure there are some great information and even greater people like Old Man and James to name a few but what are we to do?  I am on Pentox, Vit E, CoQ10 w Ubigquital and Ginko Balboa.  I have NO CLUE if this is good or bad.  I have the beginnings of a significant curve and I am scared out of my fnnnn mind.  So what do I do?  I am married to a younger gal who is amazing.  She is sexy, interested, warm and kind and I am terrified that our days of loving will come to an end.  She has so far been supportive, kind and willing to work with me.  At first the pain was so intense I could not have sex.  The Pentox did take away the pain.  However, I have to use lots of jelly and enter at an angle.  I hate it that I have to have her help me along to keep from spinning and to keep things going.  This is what confuses me.  Which protocol is the best?  Why was I not told that glucosimine might be bad for me?  I have taken that for arthritis for years?  I have never heard of some of these other drugs?  Potaba or whatever?  There are so many different cocktails?  Which one is the best?  Is the damn thing curable?  What if I don't do anything?  What will that mean?  Why is it that I am "cold" like freezing all the damn time.  My skin hurts!  Is that the Pentox?  Is that a big deal?  I think we all want answers but it is a hodgepodge of information.  I am so sad to hear younger people talk about this crap.  At least I am 60 and so I have had a pretty good sex life for many years but this is just awful for the younger guys.  I can feel their pain and their deep sense of loss.  What do we tell them???

[emasculated]

@jb: It's not much and they're all off-label drugs. You take the "right" stuff, that is the stuff with the most evidence backing it. Which could still be better.. but oh well. Forget Potaba, minimal benefit at best. The doctor's don't take this disease seriously. I agree with you, for a man there's hardly anything he couldn't go through, any disease he couldn't muster. But this is just ridiculously hard.

EDIT: But if I can suggest some minor modifications to your regimen. Drop the Vit E, just a placebo. And add Cialis 2.5 mg daily.