Just found out I have Peyronie’s at age 25 but also low testosterone symptoms

[Pohlski]

So I had an injury from sex around 4 months ago. Didn't think too much of it. Noticed over a couple of weeks that my erections were not as strong. Then suddenly one day around 4 weeks after the event I felt realy I'll waking up, no energy dizzy nautious. I sent myself home from work and I immediately realised something was seriously up. Until this  Iv been a very fit and healthy and extremely confident guy gym 5 times a week and love life. I was all of a sudden suffering from erectyle dysfunction, Penile and testicular pain and  felt incapacitated, my feet hurt to walk on my pulse is always racing an is especially bad When I stand. I had a full STI screen to rule that out which was clear. I then requested a testosterone test as I had all the symptoms of low T: fatigue, muscle weakness, loss of body hair, loss of spontaneous erections, night sweats, fatigue, low mood. My first test done around 4 weeks after symptoms  came back at 3nmol/l which is extremely low and would qualify for TRT. it needed to be repeated tho. On the repeat test about 2 weeks later it came back at 9.9nmol/L which is low but would not qualify for TRT on the NHS. I had seen 8 different gps over 15 different appointments and explained all my symptoms and was told that I was fine and told to take diazepam and to go for cognitive behavioural therapy. I organised to see a urologist privately who also specialised in hypogonadism (testosterone deficiency)

I noticed a lump on the under side of my Penis just below the glans during my onset of symptoms but not realy had much ability to examine as erection was difficult. Gradually through the first couple of months I started being able to get erections when I'm stimulated enough visually. I noticed that with erection my penis was twisted and curved to the left and upwards slightly Also the shaft is discoloured it's dark and looks a bit bruised on the left hand side of the shaft. Also have a tight/painful feeling along the left hand side of the shaft and my glans feels soft when erect. I can get an erection but can not maintain it without constant stimulation and effort. Also find that with sexual activity/masturbation I can maintain a solid erection for a short amount of time but then seems like if I play with it and try to put it into a comfortable position for masterbation/sex it seems to leak a lot of precum and then straight away become impossible to get fully erect I get a semi erect at best (not capable of penetration) and the pain gets more severe and goes down to my testicle aswel (left side maybe the epididymis). During this stage and also after ejaculation (which is now always painful) and sometimes after urinating my penis seems to twist more to the left and a downward bend rather than upward. It's genuinely like something happens suddenly which takes the support away from that side of my penis and Kt just twists and flops freely down there as if it's bad a support taken away

Due to the testicle pain and it making me feel sick I went to the emergency department to be looked at. I explained this to a urologist there and she physically examined the lump on the under side of my penis and looked at photos of my erection and said It looks like I have Peyronie's and that I would be put on a list for an ultrasound scan they said this would probably take a couple months

In the meantime I then had my private consultation with the urologist who would look at my testosterone issue. I told him about my trip to emergency room and the urologist there saying I may have Peyronie's
He examined my lump under the penis and said it was my urethra and that it
Did not look like an issue. I explained that the area was thicker and droopier and twisted than before but he dismissed it.
After the physical examination of my flacid penis and a prostate exam he said he couldn't see anything to worry him and he didn't notice anything abnormal about my testicles. I showed him pictures of my erection bend and he conceded then that I "may have some early Peyronie's, but that it is nothing to be concerned about and there is nothing he can do for it at this stage" and that he would send me for a testosterone test and he expected the results to come back normal and that I am fine and that my problem is most likely psychological, on leaving the room the urologist said to me "you need to move on"
I found that on the blood form he had put my date of birth as the year 2018 and out my postcode in wrong I went back and gave it to the secretary and he amended it. When I got to the phlebotomists they said that the form had not been completed as he had not filled in what hospital and what department It was from, all this from a guy who's supposedly a respected consultant with over 30 years experience...

My testosterone result came back at
Total testosterone 13.4 Nmol/l
Which is low/normal (optimal for my age would be 27)
And my free testosterone he said was 2.8 which is "within range" cut off point being 2.25
His summary was that there was nothing more he could do and he did not think I needed testosterone therapy and that my testosterone will likely continue to increase. again I said about the pain in my penis, bruising, ED and painful ejaculation. And he said that I just needed to get my confidence back and that he expects me to make a full recovery
This was obviously frustrating as it was as if the man had never seen peyronies in his life or even a penis and testicles. This was about 3 weeks ago
Since I have received notice that he has said I can avoid having the ultrasound scan for now and that I will be seeing the urologist who would have dealt with me after the scan first and that that urologist will then decide if I need to be put back on the list for a scan, Iv been advised this process is likely to take 6 months

I have seen my GP one last time this week as my nausea, fatigue, painfull feet and hands and tachycardia are as bad as they were and I have been unable to work for over 2 months now. I have been given diazepam and also citalopram for anxiety and depression

I honestly tho believe that these non Penile symptoms are not from anxiety or depression. I AM DESPERATE TO CONTINUE WHAT I LOVE ABOUT MY LIFE. I live in my beautiful home with my gorgeous girlfriend whos been with me over 11 years and stood by me through thick who is amazingly supportive about this and she is the most caring, loyal and supportive person I could ever wish for I work at a great place and I have no money issues. Regardless of sex and erections we both want to enjoy our daily lives together.

I believe whats making daily tasks like getting out of bed or walking or making breakfast so tiring and being so nautious and dizzy and weak that I feel like I'm going to collapse all the time and my resting heart rate being either 80/90 when sitting or 110/120 when standing are p from the actual disease for instance circulation issues cause by the Peyronie's or the Peyronie's Somehow harming my testosterone production?
I have tried to stay active by doing shirt gym sessions or going to the golf range but my body does not recover anymore l it cripples me in to an even worse state.

I'm sorry this has been so long and probably not very well put together, main things I would like to get from you guys experiences is

Can Peyronie's itself (not anxiety) give me issues that can make me feel this generally unwell? (Loss of balance, high heart rate, dizziness

Can Peyronie's directly affect my testosterone and does anyone have any stories of this and as it seems to have increased gradually to about half of what it should be then is it likely that this can return to an optimal level (again any experiences you have had would be appreciated) anyone any idea as to what is going on with this as I'm convinced is not psychological

Admittedly I am now at the point of depression and beginning to feel suicidal as I am feeling trapped in this and struggling to be taken seriously and get appropriate help and I have been given no treatment or even any advise on the matter on dealing with Peyronie's 4 months in. I have been taking coq10, l Argentine, bromaline and vitamin e for Peyronie's for a few weeks and also ashwaghanda to help with my Testosterone

Thankyou for your time

[Hawk]

Welcome to the forum Pohlski,  You are in the right place.  We are here for you.  

To answer your questions (I started the forum and have been here reading posts for 15 years), when I read your post at the very beginning I almost wondered what this had to do with Peyronies Disease.  Peyronies Disease is a localized hypertrophic scaring issue of the penis.  I think your symptoms have been too casually brushed aside by your doctors.  While Peyronies Disease cannot begin to account for the symptoms you have experienced, there could be some underlying condition that could be both causing your symptoms and also have an impact on your Peyronies Disease.  What that might be is a subject for some extensive medical evaluation since it is beyond my guess.

Keep in mind that stress, loss of sleep, and other factors can contribute to Peyronies Disease.  I wonder if the injury led to some ED, the ED led to stress, the stress contributed to Peyronies Disease and it is a vicious cycle.  That is nothing of course but wild speculation.

Please read over this (more than once). Peyronies Survival Guide - Information for New Members - Peyronies Society Forums

At the very least you can start some of the supplement and lifestyle changes.  Also get some accurate objective measurements to track any progress or problems.

Also, please do not allow your mind to consider something as drastic as suicide.  It is a permanent solution to a temporary problem and a poor solution at that.   The very worst-case scenario as far as your penis is concerned is you end up in a few years with an implant and sex is as awesome as ever.

One last thing.  Try to put as much info in your signature line under your post as possible.  I think it allows about 240 characters.  It will help everyone help you and save a lot of questions and typing.

Best Regards
Hawk

[slowsneak]

Hey there Pohlski,

I'm just new here as well (posted just underneath your introduction) and was very interested to hear about your story. I myself had extreme bouts of dizziness and nausea in the period when i first discovered lumps on the underside of my shaft. Unfortunately I never actually connected the two symptoms, but am going to get an ultrasound tomorrow. Hopefully I can get to a urologist, and if I do I will be sure to mention the dizziness. Have not seen it come up here before!

Have you seen any effects from the supplements you've been taking? Can relate to the depression as well, I've had many tears shed over the past couple of weeks and feelings of hopelessness have become commonplace. The good thing about this forum is to know that there are lots of other people in really similar situations to you, and many that have been through the same experience and are still living great lives.

[Hawk]

In the words of one famous actress with Multiple Sclerosis "Life does not have to be perfect to be great"  

[YoungFella]

I  had major drop in testosterone, my testosterone when from normal 24 to 10.
I believe it is related.


I think the high dose testosterone with tamoxifen and other supplements can cure Peyronies and have synergies.
Lowering estrogen which cause collagen productin with tamoxifen and reducing tgf b at rhe same time.
Testosterone has would healing properties.

Testosterone + tamoxifen is my ideaa of treatment.
My future treatment includes:
Testosterone
Tamoxifen
Maybe ALCAR
No pentox because testosterone increase RBC.
Cialis sometime
Low dose hgh
Ginger and taurine and olive oils
Coq10
Vitamin k2 to avoid calcium disposition in the inury site.

——-

This alone should stop the disease from progressing.
You should search my posts for testosterone and dht cream cure.

To me it is seems promising, conecting all the puzzle parts together.

[Hawk]

This introduction topic is now locked because it reached the maximum number of posts allowed in the Introduction Board.  Please continue the conversation in the appropriate forum Boards below.  

Best wishes for a good outcome!