Please any advice appreciated

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Last ten years struggling with many drs to no avail. Been told maybe ic, maybe pelvic floor dysfunction , maybe pudendal neuralgia. No one can agree. Been thru many awful tests. Been seeing pelvic floor therapist for couple of years which has helped with pain, but in last year now have a constant dribble of urine. Cannot do Kegels, pelvic muscles always tight, increases the pain when I try. They claim I have a lower bladder capacity, have mild frequency and urgency. This constant dribble of urine also does not hit the pad I wear but stays in the folds of my skin , and no matter how much barrier I use keeps my skin raw. They are at a loss as to the reason for the dribble and how to treat. This has made a huge inpact on my life because now it’s not just the pain I have to deal with but the leakage as well. Please has anyone been thru this? I don’t know where to turn. Thank you in advance for your time and kindness for answering me.

 

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First very sorry this is happening. But can relate to what is happening, as a male I'm treated for IC, but say I don't have it, I have no answers and also have done lots of tests. And have the aggravations raw skin, till my PCP gave me a script for some cream to use. If you want to try, I will get the name. It does help me.
Also have you thought of self cathing.
I have even read in my urology notes, they would script me Belladonna Suppositories!

 

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Sorry for your misery. I know what you are going through. I have post-radiation damage causing constant irritation. I find relief from taking 10 minute warm sitz baths when home, cleaning with gentle wipes when out, and applying Aquaphor and Calmoseptine vigilantly. (Calmoseptine even comes in travel packets. Ask at pharmacy counter.) If it gets really sore I apply Neosporin ointment till it improves. Also I make sure my underwear and slacks are not too tight and confining. Good luck!

 

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Here's my totally non-medical male suggestion, maybe muscle relaxers could help with the pain anyway.

 

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Hi Sue, hang in there you are with good people here with more helpful advice than you can shake a stick at!! The self cathing may be the way to go as it will keep your bladder empty and the urine won’t get a chance to irritate your skin. When my skin gets raw I use A&D ointment and bacitracin and it doesn’t take long to heal. I wear diapers 24/7 and am usually in a wet diaper for most of the day, but I’ve tried many many products and have found a few products that soak up quickly and disperse the fluid very well. Maybe the pad your using isn’t absorbing quick enough, switching to a better pad may help, look at what Northshore has, they can also help if you contact them. Keep your head up and keep working at it, you will find a way to manage through it and we are here to help!!!!

 

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Have you tried reverse-kegal? The pelvic floor being over tight is just as bad as being too loose.

 

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Thank you all for taking the time to answer, Spaz what is a reverse kegal? I will ask my therapist tomorrow. My Urologist told me yesterday there was nothing he could do , no hope. I have come so far pain wise to hear there is no hope urine leakage wise is devasting, Im still pretty young. There has to be an answer out there for most of us and hopefully all of us. I keep searching, and talking and trying to never give up. If you breathe there is always hope. Thank you all, and please if anyone else has gone thru this please share, bless you all.

 

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I can’t explain then well. Google might help you understand a little better than I can.