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ashtown

Sorry in advance if this introduction post becomes too long. First of all I have to say that I haven't been officially diagnosed yet as having Peyronies Disease but I saw a doctor 2 days ago who seemed pretty certain this was the only likely cause. I haven't even had a checkup in 20 years so it was quite hard to go in there and raise my concerns on something like this.  

When the doctor told me he thought it was Peyronies Disease he just said there was no treatment and he offered no reassurance or advice whatsoever. He didn't even go into any great detail about the disease itself. For empathy I'd give him zero out of ten. He just said we'd have to carry out an ultrasound to confirm the diagnosis but he hasn't set any kind of date so at the moment I am in a state of limbo where I am unable to think of anything except the likelihood that I have Peyronies Disease.

When I started trying to explain my experience in greater detail I actually felt he was viewing me as some kind of freak and he clearly wasn't comfortable but I bet he wasn't feeling half as awkward as me. During a quiet moment I did mention to my wife at the weekend that I had experienced some pain recently when we had sex but said it was likely I had strained something so it was better if we hold off for a while. We agreed I would go to the doctor but I haven't told her yet how it went because I don't want to worry her until I know for sure and have more facts.

The timeline for my problem starts about a month ago when I first felt some pain with an erection but on a scale of 1-10 it was probably only a 2 and I was able to have sex OK with my wife pretty much as normal. Then about 2 weeks ago we were about to have sex again and I suddenly found I was struggling to maintain an erection which has never seriously been a problem in the 17 years we have been together or with any other woman before that. We had a very lacklustre minute of sex at most and then I just lay there quietly embarrassed wondering what the heck had happened.

Then about a week ago we were about to have sex and I was masturbating beside her when I suddenly felt the middle of my penis go completely soft and shrink while the top and bottom remained hard before going soft all over about 15 seconds later. That scared me and I was suddenly left making excuses again. She was very understanding but nothing like that has ever happened in my life and I knew now that something was wrong, however I figured it was just ED. I've been under stress lately with lower than usual earning so I figured it was most likely psychological.

At the weekend I felt a couple of small hard points along the top side of my penis about the size of a pea that were sensitive to touch but definitely well on the inside and I wondered if it was some kind of stress inflammation or possibly a blood clot, so I started applying an ibuprofen gel and it has felt less evident since but it never goes entirely away. Recently I'd been doing some intensive weight training so I wondered if I'd forced something but when I mentioned this to the doctor he ruled it out entirely as a possibility.

Over the last few days I have been experiencing erections when I wake up in the morning accompanied by minor pain but it's all I can do to maintain them for a minute by squeezing my PC muscle before it goes flat and this morning for the first time there seemed to be a definite curve downwards, which is something completely new.

My apologies for the long spiel but I've been keeping this all to myself and the more I read about Peyronies Disease the more scary it seems to be. Also the more likely that I have it so I'm just hoping to find some more information.  
Dec 2013 - Replaced all prescribed medicines with plenty of fresh vegetables, sleep and exercise

james1947

ash44

You don't have to be sorry for the long introduction because it makes your story more understandable.

First I would like to say that you must urgently find an other doctor!
Many of us encountered non competent doctors that have nothing to say.

If it is Peyronies as your doctor has stated and the symptoms are, you are in the beginning of the acute stage of this disease and this is the time you have the biggest chances that an oral treatment with VED (or traction device) will stop the progress and even revers the Peyronies.

Myself taking a daily dosage of:
2*400mg Pentox
2*1000mg L-Arginine
2*100mg Ubiquinol
4 or 5mg Cialis
Doing VED 20 minutes
I begin the treatment after three years of the first symptoms and it was a big mistake because the chance is low that oral treatment will help in this stage. Trying to see if will help before I will make surgery.

I am also proposing you to read much as you can on the forum to understand better this disease.

Regarding your wife, I think you should talk with her openly and explain her what it is. But is just my private opinion, you may know better than me what to do.

Best wishes an welcome to the forum
James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

ashtown

Thanks for your quick reply James. At the moment this is pretty much all I can think about and some of the difficulties maintaining an erection may even be partly psychological at this point because I am suddenly dealing with the imminent expectation that it will fail, which isn't great for confidence.

That list of treatment you are taking looks a little scary to be honest but that is probably because I've never really had to take any medicines before and I've always been very healthy. So far all I've done is run out to the shops and bought some capsules of garlic and cod liver oil along with magnesium and vitamin E tablets. A part of me is thinking that I have to do everything possible that will promote good circulation and general health. I feel an intense need to fix this completely and quickly.

I will have to talk to my wife of course and I honestly don't know how she will take it. I'm not even sure how I will take because right now I don't know the likely outcome. We have been together 17 years and never had an argument in all that time so I guess that is a good start but I can see how this might put us under stress over time judging by a few of the forum posts I have read. Some things online make Peyronies Disease sound like no big deal that is merely a mild inconvenience for a year with no major effects and then there are others who literally sound suicidal.

For years my wife has suffered from reoccurring urine infections and this has made our sex lives far less active than I would have liked but recently she was able to establish that there seemed to be some connection between having sex and then having the infection occur so her doctor gave her some medicine to take immediately after we have sex and that seems to have helped. Incredibly after all these years when we finally have that under control about a month ago I suddenly have this problem emerge out of the blue. I even wondered if they were connected but it seems unlikely.

Yes I have some concerns for sure about the doctor and really expected a better response. He is the main doctor at our local surgery and responsible for training others so he should be quite good, though this is probably something he sees very rarely. He started off friendly but as I started to explain the symptoms I just saw his face dropping within 10 seconds and he looked quite uncomfortable with the whole conversation. He is probably fine dealing with common colds or people who are a bit overweight but his whole reaction listening to my problem was of barely concealed disdain, so I walked out feeling pretty rough. Tonight I decided I had to start looking for more information myself and try to contact others in this situation.    




Dec 2013 - Replaced all prescribed medicines with plenty of fresh vegetables, sleep and exercise

james1947

ash44

I agree with you the a part, maybe even big part of ED may be psychological because of the scare not to deliver what you was used to. I passes also (and many others as well) this stage.

Regarding:
QuoteThat list of treatment you are taking looks a little scary to be honest
The point is that I begin slowly and very carefully to see that I have no any problems as you can see from the list bellow:
VED usage 10 months.
2.5mg Cialis daily 10 months, increased to 4 or 5mg four months ago. Cialis helps with ED and also softening scar tissues
Pentox 2*400mg daily, started with one, makes the red blood cells more flexible, increases the blood flow and oxygen supply
L-Arginine 2000mg daily, started 3 weeks ago, in NORMAL situations, Arginine relaxes blood vessels and increases circulation
Ubiquinol 2*100mg daily, started 3 weeks ago, is excellent for cardiovascular health (for younger than 40 can use CoQ10, more cheap)

As a general advice, you must to be proactive with this disease and earlier as possible.
Try to be positive (I know is not easy) and find a Peyronies specialist. Have some in the UK also.

Today is the American Independence Day, I am sure later our US friend will jump in also with some advices.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

ashtown

Thanks for the break down and explanation of those medicines James. Here in the UK we have the NHS and after reading another post on this forum it looks like their basic approach is to do nothing except offer surgery as an eventual last resort, which doesn't fill me with a great deal of optimism.


At the moment I'm experiencing a bit of a roller coaster with my emotions but I don't think there is a shadow of a doubt that this is Peyronies Disease and I need to face that. At times I am convinced it won't be that bad and I'll somehow walk through this to make a full recovery and then I read up some more and I come close to tears because I realise the implications of what this could do not only to myself but also my family. Perhaps I'm making too much of this but I feel vulnerable and that's why I'm writing this so late at night while my family is asleep.


So far I haven't told my wife because I want to be as informed as possible before I broach the subject at the weekend so that I can explain this in the right way, assuming there is a right way. I also want to tell her what I am going to do to try and fix this. I still have to hear back from the doctor but I shall print out your list of medicines that could be considered and try to push this. I have no wish to fill my body with a cocktail of tablets but on the other hand doing nothing doesn't sound realistic and I think early intervention is likely to be important.


We have a teenage daughter and I am very mindful of the fact that I need to keep my emotions in check as this progresses so that she protected and I don't want her to know about this. Having always been a joker around the home I can't allow myself to become completely consumed by this and depressed.


It may sound stupid but in every other respect I am so healthy and in brilliant shape for my age with a full head of hair and a genuine six pack flat stomach. Most people think I'm about 10-15 years younger than I actually am and I often sense a bit of envy, yet suddenly I feel like damaged goods, so I can appreciate how this must affect the confidence of many men. I am wondering if there is any evidence about how lifestyle might affect recovery rates with Peyronies Disease. Are those who take care of themselves generally more likely to see positive results?


Something weird is that my penis has felt cold for a large part of today and this is presumably an issue of circulation that has just emerged. It's uncomfortable and at one point I ended up making myself a warm drink mainly so I could rest it on my lap to take away the chill.


One side issue. I am not receiving email notifications when a new message arrives but I am pretty sure I have it set correctly to send through instant notifications when somebody replies and I've checked the spam filters for my email. Another over long message from me but this is a whole new adventure and as I'm learning about Peyronies Disease I just can't understand why there hasn't been more research or recognition of the disease. A week ago I had no idea this condition even existed.  
Dec 2013 - Replaced all prescribed medicines with plenty of fresh vegetables, sleep and exercise

james1947

ash44

I suppose the answer to your question:
QuoteAre those who take care of themselves generally more likely to see positive results?
is yes.

I am proposing you to read the board of "Causes of Peyronies Disease"

I agree that you have difficult time right now, we all passed that, but the bottom line is that have solutions so you have to learn the subject much as you can to see what are your possibilities.

James

Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum