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ScanPd

Hi guys,

I'm 25 years old and from Sweden. I got peyronies in the beginning of june and was diagnosed just last week. I got it from masturbating but I guess I can't blame myself for it since I would have gotten it anyway sooner or later. I same to have these genetic traits since I have keloids on my chest.

I contacted our family doctor who then referred me to an urologist. The waiting times are really long in Sweden. So I went with it without treating it thinking it would go away and just went on with my life. Up until recently when I read up more about the condition and I realised that it will only get worse. As of now I have an intendation and a slight curve to the right (luckily I have a congential curve to the left).

The gov urologist that I finally got to see two weeks ago wanted to go with the 'wait-and-see' route (what would you expect?). I then contacted a private urologist who seem very experienced with peyronies and other erectile dysfunctionalities. He too wouldn't want to treat me now that I am in the acute phase and he said that I have researched too much on the internet when I asked about pentox, xiaflex and such. He gave me a physical exam and said that I have two calcified nodules and an area of plaque. He assured me that this was benign and that once it has stabilized he can do ESWT treatment on it.

As of now I am very sad. Even though I don't have a big curve and sex is still very possible it has ruined it for me. I am a very sexual person and I feel as if I have been robbed of my sexuality.

As of now I take Q10 + Selen, Vitamin E and I am on a strict anti-inflammatory diet. I juice some curcummin, ginger and carrots every morning and evening and eat a lot of blueberries. I have also started taken ACL just this day.

My prio right now is to get ahold of pentox but it seems really difficult as the two most popular sites you list here on the forum no longer sells pentox and the one inside EU now requires a prescription. I have read that pentox is available as over the counter in Spain so I am seriously considering flying over there and bring a batch with me. I have also asked a person I have distant contact with that live in Barcelona to send me some but he has not answered yet.

As for physical therapy. My plaque is located too near the glands so I think it will not be possible to perform traction. As for VED I have read up a lot about it but the risk of making it even worse seem too high. As of now I seem to cause a flare up if I even touch it too much or it brushes against my pants for too long.

I hope you guys from EU could guide me with acquiring pentox reliably.




Stabler

So, Do I understand that the second urologist that you went to see did not offer any treatment ? I feel like if he said to you that you "researched to much" and came to him with viable treatment plans that he dismissed that unfortunately you need to seek another physician. We are constantly researching this disease, we want answers for the members that suffer from it. Did the second urologist offer any kind of helpful information or say that he had any kind of treatment plan he could put in place for you?

Stabler67
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

Jonbinspain

Hi;
Welcome to the forum that no guy really wants to be a part of!

I can confirm that in this part of Spain, Valenciana, Pentox  is available without a prescription.

If you're plaque is calcified, you should be through the active phase. The bad news is that calcified plaque is far more difficult to deal with.

Before I elected for surgery - my condition was far worse than yours - I wrote to the manufacturers of Xiaflex asking if the drug would work on calcified plaque. They replied that they didn't know as it had not been included in their trials ( surprise, surprise! ) In any case, it's very expensive and there are no guarantees it will work at all.

I would look at the sections relating to traction and VED. These may well help you mitigate the curvature and help maintain overall penile health.

ArtDude

Hej, welcome ScanPD!

I used to live in Sweden for some years and Im about the same age as you now, so I know how it feels. I really like the Swedish public healthcare system, but when it came down to my penis problem, they also weren't able to help me much. Long waits and it took me like 6 months to get an appoitment with a urologist in Stockholm. Since my case was congenital all along, I pretty much knew that surgery was the way to go and they didnt have surgeons specialized in that type of surgery. I even considered visiting Dr. Kuehaas in Austria, but at the time I knew I didnt have the money to go through all the process. Anyways, what Im gonna ask you know might be a bit unethical but, considering your situation, would you have any friend who is a doctor (even general practitioner) and whom you would able to invite for a fika, open up to and talk to them about your problems? Maybe they are able to help with prescriptions if they hear you out or know someone else, even private docs, who are able to help with your case.

Lycka till!
ArtDude, from Canada
28yo, I used to have congenital curvature (90deg down curve). I had a successful surgery in 2016 (26 yo) with Dr Egydio. Living happily ever since.

Read my story and see my progress report  on this forum

ScanPd

Stabler: he was suggesting I wait until it has stabilised and then he will perform eswt treatment. So yes, he has a plan but not what I was hoping for. He seemed very experienced with Peyronies Disease though. And brushed my case of as mild (does not help me in my sadness but still). There's a urologist in a neighbouring town that participated in the xiaflex trials but he's a public one so I don't think I have access to him.

Jonbin: my plaque has two small calcificated bits. One small dot and a small string. The urologist said how big they were but I didn't put that in my memory. I don't think that I am in the chronic phase yet as I'm only 3 months in.

ArtDude: I had to wait three months to get to see the public urologist, and that didn't give me anything either. Luckily the private one gave me an appointment a week later. Unfortunately I don't have any doctor friends and I am considering flying over to Barcelona just to get it.

Lucky for me I have a very supportive girlfriend. Without her I don't think I would have made it out one the other end of this.