Peyronies 3 & A Half Weeks ago

[Alias018]

Hi all,

To Introduce im 23 living in the UK, and I started having Peyronies Disease Symptomns about 3 and a half weeks ago.

At that time I initially noticed whilst masturbating that my penis was appearing as if it was leaning/bending more to the left side, It has always been a little curved to the left however it appeared distinctly more so than usual, I also felt that my erection was somewhat shorter or only at 80% of its usual strength, and noticed I have a red patch on my foreskin.

A couple of days afterwards I realised that my penis was a good bit shorter than it usually is whilst flaccid with almost all of the tip hiding behind the foreskin in a way I'd never seen before, often it is difficult to pull back the foreskin past the head now. And that I had a big decrease in libido/ability to get and maintain an erection + no/weak morning wood. I also noticed I had a feeling of leaking fluid from my uretha but it would only occasionally leaving dampness in my pants (this seems to have stopped now), also I've had a strange tingling feeling in my testicles and sometimes anus (this is becoming less frequent but seems to come on whilst sitting down most times). As well as this I felt I could feel a stiff area on the left side of my penis,

I spoke to my GP who suspected I had an STI so i went to a clinic and provided a urine test which came back all negative, later I saw a physician at my GP's who I explained my symptomns to and did a physical exam, he said he could not feel any lumps on my penis but suspected I may have epididymo-orchitis due to tingling sensation in the testes. I also showed him photos i took of my erection on day 1 of noticing curving to a week after, which he agreed there was a difference and to keep an eye on. He has referred me to a urologist who I am apparently on the waiting list to be referred for (NHS for you), and next week I am having an Ultrasound on my kidneys, bladder, and testicles, but not penis

Another week after and I just about managed to get an erection from physical stimulation but to my horror my penis appeared slightly shorter again, far more bent to the left side and with a dent/indentation in the middle before the curve to the side.

To where I'm at just now, yesterday through incredible difficulty I was able to get a bit of blood moving down below but upon taking off my pants I now see that what I felt was an erection resulted in something only a bit bigger than my current flaccid size with the bottom of my shaft widened, the middle of my penis in wrinkled (fore)skin bunched up tight together, and the rest past the wrinkled section in the middle un-erect and weak looking leaning to the left side.


I've been reading various posts on this forum and reading online about Peyronies topics, ED, Size and Girth loss, deformity, hourglassing (I think this is what I now have since yesterday is called?) and I have ordered the recommended oral supplements mentioned in the survival guide, am in the process of ordering a traction device (RestoreX, although im not sure if i will have difficulty using it in my flaccid size which looks to be about 2 inches or less), and also possibly a VED, im also taking steps to reduce inflammation in my diet and include more anti-inflammatories in what I eat.

However..
The thought of living with a permanent & progressively worsening condition such as this is terrifying to me and has left me feeling utterly hopeless, depressed, and scared about my future life, I've booked in counselling sessions once a week for 8 weeks which I will be starting this Saturday, have opened up to my parents & a close friend about what is happening with me, needless to say however I haven't been coping with this well whatsoever I had my first proper breakdown 15 minutes ago on the phone to a mental health hotline number.

Nevertheless I am glad that there is a forum as big as this for us unfortunates.

 

[Mikel7]

Welcome to the forum AliasO18. The first thing you need to do is to fill out your signature line -->Signature Line . This will give other members a quick snapshot of your history.

I'm sorry for what you are going through and I can assure you that all of us here have experienced the same emotional feelings associated with this disease. Things can and usually do get better with an accurate diagnosis and s treatment plan. You are taking good steps forward by seeking counseling as it can help you cope. Sharing with those close to you will also help in the emotional department. You will make it through this and remember that this is a marathon and not a sprint. Things take time and patience when it comes to this disease. Remember that peyronies is a healing disorder in your body and is fueled by inflammation. Reducing inflammation in your body and reducing stress will help a lot.

You really need to have an ultrasound to get a proper diagnosis. I am not educated in how the health care system runs in the UK. It is probably all referral related? Some of the supplements are worth a try and Pentox may or may not help you. Cialis or like drugs will help with healing and providing fresh oxygen to your penis. Starting traction and VED can also prevent further damage/shrinking. Read up on the forum about such.

 I would also educate yourself from the survival guide and make a list of questions for your DR. Can you actually get into a urologist? Hopefully one you can work with or even one who is educated in peyronies. A lot of us members have had to see several DR's before we found one who was educated and not an idiot or arrogant. Remember that you are paying them to help you. They are providing a service for you.

I know in the start of this you are probably experiencing a thousand different negative thoughts. Don't go there! Also don't obsess about trying to get an erection and just know that you will get through this. Also try to keep sex to a minimum. Use a LOT of lube and be gentle. You are young and your hormones are at their peak. Your post shows that you have a clear level head about this.  

Mikel7

[Alias018]

Hi Mikel, thanks for your words of encouragement, yes the NHS process is essentially;

-Contact GP
-GP gives an appointment for discussion/test/exam in practice
-Referral for testing or to specialist.

And I will definitely be forming a long list of questions when I can get to a urologists, although I have a feeling that they won't have much more knowledge about this than anyone else however.

Since researching Peyronies on the forum and elsewhere I do find it a bit bizarre that a severe condition so common that it allegedly affects 1 in 10 men aged 40-70 has such little understanding surrounding it, and how I had never heard of it before until 3 weeks ago.
 

[Mikel7]

It is because it is not a huge money maker for Dr's in the USA. It is interesting though that recently commercials referring to a bent carrot have been on the television. This is the first time peyroneis has been more talked about on TV.  It is promoting Xiaflex injection therapy. This is a big $$ for Dr's.

[ThinFizzy67]

Keep fighting the good fight. Counselling is definitely the best move to deal with the mental health aspect. If I can reccomend it, pelvic floor physio may be something worth looking into. It's the only thing that started to give me answers when I felt hopeless.

[Alias018]

Thanks, how substantial of improvements did you see from incorporating pelvic floor physio?

[Mikel7]

For me the therapy does help my pelvic tone. After my injury everything became extremely over tight so every other connected muscle compensated. The therapy provides relaxation exercises/stretches and correct toning ones also. It took me about 3 months to see consistent improvement. I can tell you though that the pain in the beginning is indescribably. I would wake up from a sound sleep with severe shooting pains that would put me in a cold sweat. Those days are behind me now.

[Alias018]

Sorry to hear that Mikel, i havent for a while now, but at the beginning of having syptomns i had some mild pain in my lower left back and front left lower stomach area.