Recently diagnosed and seeking some advice

[cam501]

Firstly, what a godsend this forum is. There's a lot of very useful info, which I've been very grateful for. And, after spending literally days on end reading here I now have a few queries.

Some background – I'm a 46 yo man. About 15 months ago while having sex with my partner in a kind of difficult position I felt a kind of crack (almost like my penis breaking). There was a tiny speck of blood a few minutes later out of the end of my penis and very minimal pain. I didn't think too much of it, but perhaps a month or two later I noticed two small lumps on the top of my penis. I showed them to my doctor, who pretty much dismissed it and said "nothing to worry about – they'll go away".

The lumps have remained. Albeit they have not grown in size.

About 8 weeks ago, for the first time ever I noticed a bend in my penis about half way along when erect of about 30 degrees. Researching it all I found this site. I went to see a urologist in Thailand, where I currently live, about a month ago. I explained all the above and he diagnosed peyronnies. He never looked at my penis, not ran any tests, but just diagnosed based on what I told him. He put me on colcichine and testosterone gel (Androgel) and also convinced me to commit upfront to paying for 3 courses of electro shock wave therapy (on the basis that he said it has "cured" about 80% of patients he has seen that present with Peyronnies). I also started taking CoQ10 2 weeks ago. I should point out I have no pain, but in the previous six months had bouts of erectile dysfuntion. (perhaps 50% of the time I tried to get hard – as I started taking Viagra I can't be sure of the figure).

I had the first treatment of shock wave on the day I saw the urologist about a month ago. His English is not so great and my Thai is poor so it's a long difficult process in getting answers to my queries.

After the first shock wave treatment I did notice a softening in the lumps almost immediately.

I returned for my second shock wave treatment yesterday and, after having done a considerable amount of reading and research on here decided I wanted to cancel the third (I was able to negotiate a refund on – it was about US$600 per 30 minute treatment). Reading all the symptoms here I am 100 per cent certain I have Peyronnies. So I also requested Pentox and Cialis, which I got from the urologist. I have decided not to go back to this urologist as feel completely under confident in what he was saying and when I queried him on the 80% success with ESWT got very vague answers – in short I felt I was being fleeced for my money. Thankfully I have 3 months supply of Pentox and Cialis now so can begin treating with that along with the CoQ10 and am endeavouring to source the other suggested supplements – L Argninine and Acetyl L-Carnitine .

I have about a month's supply of Colcichine so will finish it, but then come off it. The only change I have noticed in the past 8 weeks or so is a softening of the lumps, which I believe to be from the shock wave.

So my queries are:

Given the above am I giving myself the best possible chances of eliminating Peyronnies? Anything I am missing here?

Is it best to take the 2.5mg daily of Cialis just before bed? Or it does not matter when each day?

Also I notice a comment often of not taking Pentox after 6pm? If the advice relates to not taking it close to the time one goes to sleep, what is the optimal amount of hours before taking the last pentox for the day, rather than a specific time of day. (I often go to bed at 2am). Also what is the issue with taking it close to the time one goes to bed?

I queried the urologist yesterday why he put me on the Test gel, and I never got a straight answer. My testosterone test showed 4.80ng/mL which I understand is within the normal range? Is that correct? So I plan to stop using the gel when it runs out in 30 days.

If my symptoms simply stabilize while on Pentox, Cialis and the  supplements should I consider that success? And how long should I continue the above treatment if after, say 3 months, there is no change. 6 months and no change? 12 months and no change? If there was a significant change (let's assume the lumps completely go and the bend disappears and the ED stops) – should I then completely stop the treatments?

At some point in the latter part of 2017 I will return to Australia (Sydney) and hope to see a urologist there, but for now am choosing to self-treat, given all the comments about early intervention being the best.

Any advice/comments and answers to the above would be much appreciated.

[nemo]

For my part, I would not let a shady doctor (which I believe you have) put me on testosterone. That is a serious hormone that can have serious and unintended consequences, especially when not monitored along with all those unintended consequences (for instance, the sudden increase in testosterone triggering a sudden increase estrogen and/or reduction of your natural testosterone). I would drop the testosterone sooner rather than later to get yourself back to "normal." If you want to look into T replacement later, do so in Australia with a competent doc.

Second, yes, Cialis at bedtime is fine. It lasts for many hours/days, so it doesn't really matter what time of day you take it, and taking it at night often minimizes side effects (basically you sleep through them).

If I were you, I'd stick with the COQ10, Pentox and Cialis. Those are the current standard for treatment, as you'll find reading the forum here. You should also read up VED, and traction - which seems to be growing in popularity over the last year or so. Beyond that, I'd sit tight until you are back in Australia and can see a competent, credible urologist.

Sounds like you've got it under control and I wish you the very best.

Nemo

[cam501]

Awesome, thanks for the advice. Is anyone else able to comment specifically on the unanswered queries (cut and pasted again below):

Also I notice a comment often of not taking Pentox after 6pm? If the advice relates to not taking it close to the time one goes to sleep, what is the optimal amount of hours before taking the last pentox for the day, rather than a specific time of day. (I often go to bed at 2am). Also what is the issue with taking it close to the time one goes to bed?

If my symptoms simply stabilize while on Pentox, Cialis and the  supplements should I consider that success? And how long should I continue the above treatment if after, say 3 months, there is no change. 6 months and no change? 12 months and no change? If there was a significant change (let's assume the lumps completely go and the bend disappears and the ED stops) – should I then completely stop the treatments?

Many thanks.

[Jonbinspain]

Pentox potentially has numerous side effects. However, these affect all people differently, or not at all. Whichever way you will certainly need a period of acclimatisation to the drug.


My best advice to you would be to get to a genuine Peyronies doctor asap, and find out just where you're at with this problem.