Not sure where to turn

[Help100]

Hi, I hope someone can help me. I've been going to so many specialists, and I'm getting progressively worse.

I have a lengthy history that includes a diagnosis of corporal fibrosis years ago from accidental injuries to erections. Also, firm flaccid, mild curvature and size loss, some ED, pelvic floor dysfunction. But things changed last year, when a jaw injury made my severe sleep apnea even worse, and my ability to heal got worse.

All of a sudden, the penis became really fragile, any slight bending (like if I was sitting on the toilet with a morning erection, and I pushed it down a little to avoid the head hitting the seat) would cause an injury, an immediate loss of erection, and I'd wake up the next morning with noticeable loss of top-to-bottom girth. Like, the tissue was gone in both the flaccid and erect states.

Fast forward to a few months ago, when I had a Doppler ultrasound done. The tech told me to hold the erection up so she could get a better angle at an artery at the base, but she pushed the probe against my penis away from my body and down. I screamed in pain and lost the erection immediately. The doctor walked in and downplayed it, said the arteries looked great and that I had some fibrosis.

I lost more girth and had another ultrasound with a different doctor a month later. This time I made sure to avoid the bending, but the test showed horrible blood flow and worsening corporal fibrosis, and afterward they performed Shockwave therapy and had me meet with a sex therapist there. They gave me an injection to bring the erection down, but it didn't work, and by the time they gave me a second injection, it was more than two hours erect.

Ever since then, my penis has basically been dying. I am losing girth every day. There's a large gap between the head and the shaft on the top and the underside. It's been hypersensitive in the flaccid state (like another new member said was happening to him.) I had a pelvic angiogram last month, where the doctor couldn't visualize the arteries going into the penis.

I'm following up with more doctors, but no one is taking this seriously. I've taken objective measurements (to go along with how it obviously looks and feels), and if the girth loss continues at this rate, then I won't have a penis anymore. I know that sounds hyperbolic, but the flaccid top-to-bottom girth is basically as thick as my thumb. For reference, as recently as February, a doctor who examined me said the girth was above-average, and that was after I had lost a lot.

I don't know what this is. I'm taking Cialis and getting some blood flow during my light sleep (I've been waking up a ton). It's not rock hard, but it's not like it's nothing. And yet the penis is atrophying in the flaccid and erect states at a rapid rate. Is this the Peyronie's fibrosis shrinking the tissue? Is it cellular death? Is it reversible? Why is it so severe? Why would I get so much worse from an ultrasound injection? And why has the loss been top to bottom girth? I've somehow regained a little lost length, while the width seems to have stabilized (knock on the wood I don't have).

I can't find a doctor to answer these questions or give me practical solutions. If anyone can help, I'd really appreciate it.  

[LWillisjr]

Your symptoms are unlike anything I am familiar with. I don't think it is peyronies, but I don't know what it is.  

[Hawk]

Welcome to the forum!

Obviously, non-medical members of a forum cannot diagnose what several doctors have been unable to diagnose in person with diagnostic tests.  There are probably many possible diagnoses that could fit your symptoms, ranging from psychosomatic issues like stress or body dysmorphia to pelvic floor issues or Peyronies Disease (since you do have some fibrosis).  Your symptoms are far from typical for Peyronies Disease, however.  Your erections are no doubt at least being affected to some extent by the stress and worry over your other symptoms.

At the very least, you should do the basics to care for your overall health as you look for medical answers.
1. Embrace a healthy lifestyle (diet, exercise, sleep, lay off of tobacco and alcohol)
2. Minimize stress (use guided meditation or mindfulness)
3. Address your sleep apnea if you have not already
4. Look into an anti-inflammatory diet
5. Encourage blood flow with daily Cialis and/or 25 mg of Trazadone before bed.

Hawk
Founder/Administrator