Could anyone help me diagnose the cause of my ed?

[25yoandthissucks]

I know I need to see a urologist to diagnose these issues (have an appt scheduled in a few weeks). I'm just trying to figure this stuff out in the meantime.

Basically there is some physical problem with my whole setup, the upper corpora cavernosa does not engorge with blood. There is some sort of injury near/below my pubic bone, to the fascia, the tunica albuginea, the corpora cavernosa, or something that causes complete ed in the upper part. I physically feel weird sensations in that area. I took a doppler test+injection last year, where the injection actually worked pretty well (though last year my ed wasn't as bad), and they didnt find anything. But what I felt personally was some blockage as blood was trying to get past that pubic bone area.

Anyone have any ideas?

[bldoink]

Chronic Pelvic Pain Syndrome (CPPS) and or the related Hard-flaccid syndrome which may be part of or the same syndrome as CPPS. The site administrator and one of the forum members seem to be well-versed on the topic.

[Gt1956]

Chronic Pelvic Pain Syndrome (CPPS) and or the related Hard-flaccid syndrome which may be part of or the same syndrome as CPPS. The site administrator and one of the forum members seem to be well-versed on the topic.

I'm thinking along the same line. Warning, my medical experience is a big fat zero. I understand the desire for info. But, once you get symptoms outside of the more common ones of ED. I'm thinking getting much help here might be hard to get. The best bet is if someone will send you a personal message.
Sorry.
Edit: Forgot to add this. Be prompt with your appointments. If the dr says to come back in a month. Don't wait 6 months to go back.

[25yoandthissucks]

I've been through all the pt you can imagine for pelvic floor stuff with no luck.. :/

[Frank Talk Admin]

Hi,
I definitely cannot diagnose, but I can suggest what to talk to a doctor about. Where do you live?
First, unless the urologist is a sexual medicine specialist, he is not going to find anything. They are only trained in surgery and diagnosing cancer, deformities, etc. So, go ahead and keep that appointment to rule anything else out, but if you had an ultrasound already, then they are not likely going to find anything.
Second...if you are not getting great erections, that should be the first goal so that you can be up and functioning and having a normal life while someone helps diagnose what is going on. Are you using injections? Do they work at all? If not, please find a sex med doctor to get you functioning ASAP so you can get your life back. Then, keep working on the diagnosis.
OK, it still sounds like a pelvic floor issue. I don't know what you've tried...and maybe you've tried all of these. The biggest mistake I see in CPPS treatment is a monotherapy approach. PT alone is not great. You need stress management in the form of behavioral health sessions with a great therapist. We always put CPPS guys on anti-anxiety meds like Viibryd, Cymbalta, Pristiq, Trintellix, etc. No SSRIs, no benzos. You may need valium suppositories. You definitely need a new PT. There are more bad pelvic floor PT's out there than good ones. www.pelvicrehab.com or pelvicguru.com are the only places. Even then, shop around.
You need yoga classes.
You need a great sexual medicine doc to help. That is a HUGE obstacle because most sex med guys are surgeons, and you don't want a surgeon. Where are you?
Are you using a penis pump daily just as a therapy to keep things stretched out and working? a cheap $25 pump from amazon is fine. Lets find you the support you need. You need a team helping you.
Paul

[defiant]

I know I need to see a urologist to diagnose these issues (have an appt scheduled in a few weeks). I'm just trying to figure this stuff out in the meantime.

Basically there is some physical problem with my whole setup, the upper corpora cavernosa does not engorge with blood. There is some sort of injury near/below my pubic bone, to the fascia, the tunica albuginea, the corpora cavernosa, or something that causes complete ed in the upper part. I physically feel weird sensations in that area. I took a doppler test+injection last year, where the injection actually worked pretty well (though last year my ed wasn't as bad), and they didnt find anything. But what I felt personally was some blockage as blood was trying to get past that pubic bone area.

Anyone have any ideas?

Seeking pseudo-diagnoses from strangers on the internet is a dangerous endeavour.

I know you’re worried, trust me, we all know that fear and concern. But you must seek specialist investigation and intervention.

The people here are an incredible resource for information on what it’s like to live with ED, how to manage it and so on and so forth but no one can offer any insight as to what’s wrong with you reliably.

[roganx87]

Hi,
You need stress management in the form of behavioral health sessions with a great therapist.
Paul

I agree. In addition to dealing with the problem at the urologist - you need to help yourself mentally. It is very important.

[dirtman1993]

I had scar tissue that had built up over the years from previous sports injury. Dr. said it was in the lower left side and restricted the blood flow to the point I couldn't get a solid reaction. Had surgery 3-2-16 and only wish it was done sooner so my late wife and I could have used.

Photo is of first inflate and only got longer as time went by. Very happy