A DESPERATE CALL FOR HELP! - penile pain and urinary urgency

Hysterectomy, Ovary Removal, SIJD, Piriformis Syndrome etc

Re: A DESPERATE CALL FOR HELP! - penile pain and urinary urg

Postby Pontormo » Mon Jan 05, 2015 1:14 pm

Sadly the medical consultants in my last 'urgent' urology appointment were unable (or unwilling) to offer any medication or interventions to try to alleviate this insufferable pain. I have an appointment with further urologists in the coming week, so will again put your suggestions forward.

Crucially what has happened in my case is the following process:

Over time I have experienced stuttering priapism episodes, during which the muscles spasm and ache at the base of my penis/pelvis and after ejaculation this also causes this muscle spasm to occur. At each occurrence, this unexplained phenomenon has produced progressively worsening symptoms:

Post-ejaculation spasm, whilst not maintaining rigidity in an erect state, the penis does not retract back to its previous flaccid state. After each occurrence, it has become progressively longer and limper in the flaccid state, with glans discolouration, and visible arterial and vascular changes evident in the penis. The tissues appear less elastic and it no longer returns to its prior flaccid state (some kind of blood-oxygen problem related vascular/arterial/blood-flow?) Each episode results in further loss of sensation, worsening erectile dysfunction and a constricted ache pain; my greatly reduced sensation in the penis no longer responds to stimulation. Moreover, after each event, my urge to urinate, the frequency of urination, and the severity of the related pain in my urethra has become progressively worse. The pain in the penis is now constant agony, and the urge to urinate is unbearable. However, despite frequent urination this does not alleviate the urge or pain.

Again, if anyone has any ideas or thoughts at all these are highly appreciated at this desperate time of suffering

Thanks,
Pontormo
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Re: A DESPERATE CALL FOR HELP! - penile pain and urinary urg

Postby Violet M » Sun Jan 11, 2015 1:24 am

Pontormo, maybe your GP will order a tricyclic antidepressant and some clonazepam for some symptom relief. Or what about a pain management doc? I know how frustrating it is when a doc can't help. Often it's a matter of finding the right doc and many of us have been to numerous docs. Hang in there and don't give up until you find one who can help.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: A DESPERATE CALL FOR HELP! - penile pain and urinary urg

Postby Pontormo » Tue Jan 20, 2015 2:19 pm

Reply to violet:

Thank you again violet for your kind words. My pain is truly unbearable right now and I really appreciate any support that helps me to keep going.
I made no progress with my last consultation appointments, and I really feel that everyone has given up. I have sadly tried similar tricyclics (notriptyline and amitryptiline) with no alleviation whatsoever,but I will definitely try this clonazepam anyway, thank you. I have an upcoming 'urgent' referral with a pain management team upcoming next week, but the last team I saw (supposedly the national specialists) were unable and unwilling to do anything for me or find any relief for me. It is clear that I have caused serious nerve damage to my penis, with unbearable pains the consequence. But it doesn't seem like anyone has any answers or way forward, and I'm really really finding it hard to bare this constant agony.
Thank you again for your support.
Pontormo
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Re: A DESPERATE CALL FOR HELP! - penile pain and urinary urg

Postby Violet M » Sun Jan 25, 2015 4:20 am

Pontormo, I answered one of your other posts and suggested asking Bill Taylor, a PT in Scotland, if he could point you in the right direction. He has an excellent reputation from what I've seen other patients post. I'm just brainstorming any possible leads that might help you end up in the right place.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: A DESPERATE CALL FOR HELP! - penile pain and urinary urg

Postby theman77 » Sun Jan 01, 2017 12:11 am

Hello pontormo,

How are you doing these days?
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