34 year old experiencing unbearable pain

[dented_guy]

Hi all. Recently diagnosed (3 weeks). I have indentations on the bottom of my shaft, kind of like if you hold out your index finger and fold it inward, you can see two creases form on the bottom of your finger.

I'm really confused though because it seems everybody else has it on the top or sides and it causes curvature (mine doesn't...so far). My urologist basically said I have the best case scenario for this disease based on the placement of it.

I'm REALLY worried about the pain though. It's a sharp sudden stabbing pain that happens the instant I just think of something arousing. I'm not even hard when it happens. I guess it happens the instant blood starts to fill. I'm sure you guys know what I mean. It also happens randomly out of nowhere when I'm just at work or focusing on something else. I've read that the pain usually goes away within a year, but then I've also read people say that it never goes away. For the first time ever I feel like my life could be over. I'm really scared  

I can't put into words how sad/scared/upset I am over this sudden drastic change in my life. I'm basically horny all the time but I can't do anything about it because it makes the pain worse. I'm trying to suppress all of my sexual thoughts and it's almost impossible. Basically I went from masturbating 1 or 2 times a day to once a week. I tried masturbating gently a few times during these 3 weeks but it makes the pain the next 3 or 4 days so much worse for me.

[Hawk]

Welcome to the forum Dented_guy. I hope you find the information and support you need here.  If you had no injury, I would question that diagnosis.  I especially question it unless a high-volume Peyronies Disease specialist diagnosed you.  If it was a urologist who treats women, kidney stones, and every other urinary tract issue, the diagnosis is very suspect. If he did not detect plaque on an erect ultrasound, he is guessing.  The lack of knowledge about male sexual health, especially Peyronies Disease, is mind-boggling among urologists.

My first advice is to relax.  There is no physical ailment that is helped my mental stress.  Practice good general health.  Find a specialist and ask them for a diagnosis.  Ask what made them settle on their diagnosis and the possible alternatives to their diagnosis.  

Peyronies Disease plaque on the underside (spongiosum) is NOT a candidate for Xiaflex injections because the urethra runs on the underside.  It is a less common area for Peyronies Disease but not exactly rare.  Other than your name and the finger example, You do not mention deformity.  I am unsure if the finger example means it is curved downward or just has a crease or dent. Based on your limited post, I suspect there is more chance you have pelvic floor issues.  

Hawk
Founder/Administrator

[GaussRifle]

I don't understand how his plaque can be on top of spongosium. It has to be on the underside / ventral side to the left or right of the spongosium on top of the cavernous Al tunica. If so, he most certainly is A candidate for Xiaflex like me. Mayo Clinic urology frequently does Xiaflex on the ventral side even though the initial Xiaflex studies warned against them. Mayo Clinic actually are going to publish an article soon that ventral side curvatures actually improve much more , close to 50 percent on average when treated with Xiaflex.

[Hawk]

Mayo Clinic urology frequently does Xiaflex on the ventral side even though the initial Xiaflex studies warned against them. Mayo Clinic actually are going to publish an article soon that ventral side curvatures actually improve much more , close to 50 percent on average when treated with Xiaflex.

That may very well be true GaussRifle and I appreciate you correcting me on that point.  I was basing my statement on Dr. Mulhall's dated statement to me about my case.  When I made the statement I felt uneasy and considered contacting Dr. Trost to see if he had more information but I did the very thing I hate.  I got rushed and lazy.  Thanks again for correcting the misinformation.

[dented_guy]

My first advice is to relax.  There is no physical ailment that is helped my mental stress.  

I suspect there is more chance you have pelvic floor issues.  

Thank you, I will try to relax more. The reason I'm on edge is because I'm a "healthy" fit guy but have weird health problems. Within the past 5 years I've started having heart problems (I had a procedure to implant a titanium disc to close a hole between two heart chambers, and discovered I have a bicuspid aortic valve that is calcifying).

I don't know anything about the pelvic floor but I'm looking into it asap

Good to meet you

The lack of knowledge about male sexual health, especially Peyronies Disease, is mind-boggling among urologists.

Yes I went to a urologist in 2016 when I first started noticing the indentations on my underside, but he told me it looked normal. I wish I would have been more cautious and taken better care of myself.

[GaussRifle]

No problem Hawk. You're welcome. End goal for all of us here is to help each other.  

[Hazelboy98]

I can't put into words how sad/scared/upset I am over this sudden drastic change in my life. I'm basically horny all the time but I can't do anything about it because it makes the pain worse. I'm trying to suppress all of my sexual thoughts and it's almost impossible. Basically I went from masturbating 1 or 2 times a day to once a week. I tried masturbating gently a few times during these 3 weeks but it makes the pain the next 3 or 4 days so much worse for me.

Hey Dented Guy, I also sort of have a finger crease/tiny indentation on the bottom of my penis, closer to my scrotum for 17 months now. It's sometimes there and sometimes not, it's completely random but seems to have gotten better

I've also been dealing with the pain for those 17 months but only when I'm flaccid, seems to go away when I get erect or use it

Like you, this has pretty much smashed my quality of life, Walking around for long periods of time irritates that part of my penis and it completely sucks feeling like a thumbtack is lodged in your dick.

In regards to the pain during masturbation though, do you feel the pain after you ejaculate or during the actual masturbation? Cause I only feel the pain after I ejaculate but I've noticed that if I go to bed immediately after ejaculation that I can pretty much skip feeling any pain the next day. Or well skip feeling any new pain, I pretty much always have some kind of irritation in that spot of my penis but ejaculation often makes it more irritated

Anyways, hoping you and I recover from this pain bro. Let me know what tricks you use to remedy your pain in the future

[FrankPD]

It's mentally draining.  I'm currently looking for a specialist for a second opinion and treatment.

Hawk is right, the lack of knowledge for urologists is crazy.  We're trying to raise awareness about this not shrub it off.  Even if you look up the # on twitter there isn't really anything.  

Thanks to this forum I learned so much and I only been here for about a week!

Thank you guys so much.

[James884]

Dented guy. If it's any comfort (not that it will be) there are quite a few of us with this exact same problem. It's awful to go through. I like you was horny a lot of the time. This thing has just crushed me for the last 3 years. Mine is exactly like hazelboy, I have a constant ache pain at my scar sitebut it goes when I have an erection. It doesn't make me feel like sex ever though. It's crushed me. We need more awareness from the medical world. They simply don't seem bothered.

Can I ask anyone with narrowing/hourglassing at the scar site whilst flaccid. Do you too suffer with pain? I can live with a funny looking flaccid penis, but not pain 😔