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

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

Postby Pontormo » Thu Dec 18, 2014 2:21 pm

Dear all:

Following the foolish misuse of a penile stretching device (over-stretching and strangulating the glans), and also possible over-pumping of a penile pump, 3 years ago it has come to the point where my waking life is an unbearable constant struggle.

Please take the time to read the following summary of my case:

I am currently suffering constant, unmanageable levels of high pain in the penis. I experience a continuous excruciating sensation and unbearable urge to urinate within the urethra/penile tissues. Micturition is intermittent and frequency is now half-hourly despite my bladder having been thoroughly tested as functioning entirely normal. I have found no alleviation from even the highest doses of prescribed pain-killers and neuropathic pain medication, nor from any of my ongoing physical therapy. Without some urgent alleviation of my pain and urgent medical help with my complex problems, I remain unable to function in daily activities and will tragically not be able to resume my university education in January.

Moreover, I have highly reduced sensation in the penis and an extremely distended elongated and somewhat engorged/inflated flaccid penis (rather than the hard flaccid symptoms I previously experienced).

The pain is no doubt directly and acutely felt in the penis itself. My believe that the fascia of the penis is tonically contracted - but there are clearly blood-flow, tissue damage and nerve problems all involved. The PT internal work seemed to loosen things up, but symptoms actually worsened with my extended flaccid becoming even looser.

I am therefore reaching out to you if you have any ideas or suggestions about how to alleviate some of my current agony in any way this would be of vital help. Neuropathic painkillers (Pregabalin and Gabapentin)/regular painkillers have had no effect, nor has any of the pudendal nerve blocks that I have had, nor the TENS machine.

Scans of the pelvis have shown up distended veins on the right side of the pelvis and near the prostate. Thus, I have been referred to a pelvic vein specialist for further investigation and with possible embolisation surgery suggested.

I would highly appreciate any help at all at this truly difficult time, many thank
Pontormo
 
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Re: A DESPERATE CALL FOR HELP! - penile pain and urinary urg

Postby Violet M » Sun Dec 21, 2014 6:34 am

Hi,

Sounds pretty tough what you are going through. Have you tried any antidepressants (tricyclics like amitriptyline)? Not a cure but if often helps with the feeling of needing to urinate frequently. If you have penile hypersensitivity you could try some lidocaine spray for temporary relief. These are just temporary relief suggestions but every little thing helps when you are in pain.

You could also check out some of Ezer's recent posts on mindbody therapy. Some people have found it helpful.

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 » Sun Dec 28, 2014 12:17 pm

Thanks for your compassionate reply.

Unfortunately neuropathic painkillers seem to have no effect (I'm currently on a very high dose of pregabalin, as prescribed). I'm really suffering at the moment, with constant pain and literally almost no sleep. I will certainly look into lidocaine spray though, thank you for the recommendation.

Any other ideas of temporary pain relief or any similar sufferers out there, I would truly appreciate your help and suggestions, any at all.

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

Postby Violet M » Tue Dec 30, 2014 4:11 am

Pontormo, the tricyclic antidepressants (such as amitriptyline or nortriptyline) are in a completely different class of drugs than pregabalin and may at least help the urinary symptoms. SSRI antidepressants (lexapro) helped some with the urinary symptoms I experienced.

Have you tried benzodiazepines? Clonazepam helped me to get a few hours of sleep a night. It is not a pain killer but it does help promote sleep. There are other benzos you could try too -- such as valium.

Just suggesting some possible temporary measures that might help you stay sane until you get the right treatment. Another thing I used to do when I thought I was going insane was to alternate sitting in a shallow tub of very warm water alternating with very cold water.

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 stephanies » Tue Dec 30, 2014 4:39 am

Hello Violet,

Lidocaine has always caused a terrible burning sensation on my skin. Do you know of another drug or product chemically unrelated to lidocaine that has a temporary numbing numbing effect?

Thank you,
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13.
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Re: A DESPERATE CALL FOR HELP! - penile pain and urinary urg

Postby Violet M » Tue Dec 30, 2014 5:53 am

That's a good question, Stephanie. The Mayo clinic website has a list of topical anesthetics but I don't know if they would work for neuropathic pain. http://www.mayoclinic.org/drugs-supplem ... g-20070024

Some people have tried some compounded creams with gabapentin and ketamine in them.

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 Blossum » Tue Dec 30, 2014 4:35 pm

Hi Stephanie
I was prescribed a compounded cream prescribed by Dr Hibner. It reads "versa base cream/ketamine 10%" ... I kept it in the fridge and applied it as needed to my private areas. The cooling effect really helped the broken glass feeling that I had post-op. I also had problems with lidocaine and a burning sensation when I applied it to my skin. I guess these are very sensitive areas.....

Blossum
PNE since 2011, started from a routine gynecology surgery. TG surgery Dr Hibner 2013..... Nerve pain improved.
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Re: A DESPERATE CALL FOR HELP! - penile pain and urinary urg

Postby stephanies » Tue Dec 30, 2014 5:47 pm

Thank you Blossum. I will ask my doctor about this at my upcoming appointment.
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13.
stephanies
 
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Re: A DESPERATE CALL FOR HELP! - penile pain and urinary urg

Postby stephanies » Tue Dec 30, 2014 7:10 pm

Thank you also, Violet. Somehow I missed your post at first. I will look into the options and see what my doctor is willing to prescribe.
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13.
stephanies
 
Posts: 523
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Re: A DESPERATE CALL FOR HELP! - penile pain and urinary urg

Postby Pontormo » Fri Jan 02, 2015 12:25 pm

Thank you for your suggestions, I will take these up with my hospital consultants today and return to post the outcome of these discussions here.
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