Taking the plunge

[Puddav]

Hi

Thank you for providing this space.
I'm not sure it will help me but I hope it does.
I'm probably nervous that I will find out that what I have is both incurable and will just get worse.
I have been with pain for about around five years now and a gradual deterioration.
I would like someone to say they know what the cause was and what I should do to make things better but I fear that won't be possible.
I will end this post here but was hoping I could describe my situation and see if others had experienced what I had and maybe get advice.
Thanks again

[Pfract]

Welcome aboard! You are welcome to share your symptoms with us. Hopefully you will find more information on your particular situation that will help you out.

Please read the survival guide and also Evie treatments recommended by Dr Landon Trost.  

[Hawk]

Welcome to the forum Puddav.  It is a pretty gentle plunge to join the forum.  You are among friends and have found the best information and support available.

As a brand new member you might not even know where to find the survival guide that Pfract mentioned, so here is a link.  Please read it carefully. LINK ---> https://www.peyroniesforum.net/index.php/topic,3180.0.html

Also, it is vital that you fill in your signature line that I marked red below your post.  Read this LINK---> https://www.peyroniesforum.net/index.php/topic,10819.0.html

So, do your homework assignments and let us hear back from you.

Hawk

Founder/Administrator

[Puddav]

So this is my journey so far. And any advice on what has happened or what I should do is welcome.

I first noticed something was wrong about 6 years ago.
I had a shooting pain at the tip of my penis one day. It was a bit like when you get cystitis.
But this was accompanied by the appearance of a small brown mark at the tip.
After a few weeks I saw a doctor who then sent me to a urologist.
Anyway - pain started to get worse. And the markings on my glans increased.
At night I woke up with a penis almost drained of blood - just stringy and with no form.
I was super worried and continued seeing the urologist even as I got more brown mottled markings on my glans.
I saw a skin cancer doctor who checked me out.
I later had a cystoscopy to check my prostate and bladder and then was referred to a sexual health doctor after a noticed a slight bend to the left of my penis.
He examined and did the ultrasound which revealed what he said was small scar tissue near the head of the penis.
He thought this was Peyronies.
How it got there is a debate but it could have been due to squeezing the penis at times quite hard when erect.

However I also had other symptoms - numbness of glans, pain in buttocks, aching pain and extreme cold sensations in buttocks and thighs as well as (but maybe unrelated pain in stomach). I checked out the symptoms which tallied with pudendal neuralgia.
I asked he sexual health doctor who then sent me to see a specialist for PN. I eventually had an MRI which appeared to show possible pudendal nerve entrapment.
I had physio sessions and other exercises prescribed but no improvement.
How could I have got the entrapment - one thought is excessive cycling which I did for 2 years before my symptoms onset.

Meanwhile my sexual health doctor had originally prescribed me Trental for the Peyronies. That gave me headaches and I ceased. But he later gave me Cialis which seemed to help.

Today I take Ciallis 5mg once a day but my symptoms remain. Sometimes they is no pain and I am happy. But I feel the appearance of my penis has deteriorated. The bend is there although not severe - maybe 15 degrees. There is a bit of hour glassing. But most worrying is the head of the penis which has changed in colour and skin texture. It is blue/purple in places with blotches all over and currently I am in a deal of pain.

Anyway - question I have is - what has happened and what can I do further to help?
Was it the squeezing that led to an injury and then to my situation?
I really could do with help as I feel I have run out of options.
Thanks for reading.

[FrankPD]

This is a great forum, great threads and great people.  So much info here, use the search tab and find literally anything about this condition.  

All the best!

Frank  

[Puddav]

Thanks very much.
Good to see the support on here.

[Hawk]

Pudday,

Peyronies is scarring of the tunica beyond that which is needed to heal a wound.  It has nothing at all to do with the skin and nothing to do with the legs or buttocks.  I wish we had some ideas, but as the founder of this forum and administrator for almost 20 years, this is the first I have ever heard of your group of symptoms.  You are welcome to post your last post as a question to Dr. Trost.  He cannot diagnose over the internet, but he can tell you if he has any idea what conditions could account for these symptoms.

You mention squeezing your penis very hard while erect.  If this was some abnormally rough treatment, just state what it was in detail.  No one is going to judge you.  You just have to give details to help piece the puzzle together.  If the squeezing caused excessive pressure in the penis, you could get Petechiae.  Petechiae are pinpoint-sized spots of bleeding under the skin or mucous membranes. The purple, red, or brown dots are not raised or itchy, and they're not a rash. Many different things can cause petechiae, and some are serious.  Also, if you bled in other penis tissue, whole blood in tissue can lead to scarring.  That is at least one cause of adhesions after surgery.  It is difficult to guess what that could have to do with pain or coldness in the buttocks.  Maybe there is some underlying condition that connects it all??   Were you taking any blood thinners at the time, even a lot of over-the-counter NSAIDs ?

Good luck!

[Puddav]

Thanks Hawk,
I will do as you suggest and post to Dr Trost and will give the detail so maybe he can offer some insight.
I think I do have an odd number of symptoms and the experts I have seen have not been able to really tell me what is going on.
Thanks again for a great forum.