After 3 cystoscopies and 2 urologists I was diagnosed with Urethreal Pain Syndrome otherwise known as Pelvic Pain Syndrome. I've tried everything non-narcotic. The pain is very debilitating and I refuse to live with it. If you have it, you shouldn't either. BUG YOUR DOCTOR to find out what is wrong. I am finally on a combination of Lamictal and Xanaflex to help control it, we'll see if that works. Has ANYONE had luck with these medications??? I wish more people with this problem would post what has helped them.
I posted the above weeks ago. No one replied. The xanaflex made me super anxious so I couldn't take it. Still ramping up to the effective dose of lamictal but I'm still in a lot of pain. I'm 43 and I have too much going on to live this way. The doctors are frustrated too. I was finally sent to a physical therapist who is very interested in this particular problem. She gave me some hope that I will be able to control this constant pain without drugs. But I want a quick fix damn it!!! They even tried shooting lydicane up my urethra to no avail.
There is a lot of information out there relating to Interstitial Cystitis (which I don't have) but not about Urethral Pain Syndrome. The doctors just straight up don't know either. I was finally refered to a neurologist who prescribed the lamictal and the xanaflex. But nothing I've tried so far works. I wish some of us who have this condition (and have ruled out infection) could band together and demand some answers.
Does anyone know ANYTHING that will help aleviate this pain other than narcotics???
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