Urethral syndrome

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I have urethral syndrome that started within days of getting a Monarch TVT bladder sling. That was 17 years ago. I was told it was in my head, that I had some sort of infection, that I had IC etc. Etc. Now I am coming to realize That I have Urethral syndrome. Constant pain the urethra and always feeling like I have to pee especially at night. I have done physical therapy, ultra sound , myofacial release, lumbar injections, instillations ( pure hell) , did dilations ( more hell) tried dietary restrictions and now have a interstim implant and take lyrica, ultram, effexor and omeperazole. I live in the US. does anyone else have any ideas? I don't want to just keep living this way. The pain is all the time and my quality of life is poor. It seems no doctors understand it.

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  • Posted

    Hi Rachael sounds dreadful, what exactly is urethral syndrome ? Can you describe more what your experiencing hear please. Have you checked that any of the meds your taking arnt causing  your urethra  to become irritated in any way. Doesn't sound as though youve seen the right consultant and all them treatments done nothing, really totally unsatisfactory, poor you. Also are you menopausal age ? Why did you need the  Monarch TVT bladder sling. ?

    Sue

     

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    • Posted

      I think urethral syndrome is pain in the urethra without any infection or obvious cause of the pain. I had the TVT because I was having an endometrial ablation and my doctor suggested that I have it done since I am very active with horseback riding and running and have had 4 children. I never would have done it except that my doctor assured me it was safe and that I would never have problems with incontinence. I 49 yesrs old and don't have any signs of menopause yet.

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    • Posted

      Hi Rachael,

      I'm a male and I've had a painfull urethra 24/7 for two years now and pray that I pass in my sleep every night. Doctors won't give me anything for the pain. Has any of those medicines you mentioned done anything to ease your pain? I can't imagine 17 years you've been dealing with it. Mine started after a cystoscopy and a procedure to widen a narrowing in my urethra.

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    • Posted

      I am so sorry! I have often prayed that I die in my sleep as well.

      There are things that help me. Get to a pain clinic. They prescribed lyrica. 150mg that I take at night.

      I also have an interstim implant. It is a Godsend. It sends electrical impulses to scramble the pain signal and it helps.

      Also test your urine ph. You may be acidic. Otherwise, try taking 1/2 teaspoon of baking soda in a glass of water before bed. It will cut down the acid in your urine.

      There is also pills like Azo. It will make you per orange. It can give you some relief. Let me know how it goes.

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    • Posted

      Rachael,

      ?I have interstitial cystitis but within the past eight months most of my symptoms have been way more concentrated in the end of my urethra...I have the severe burning....just had a question...Do you ever feel like a tingling almost itching like feeling too that's kind of unexplainable...I have that feeling that kind of weaves in and out of the pain...Just wondering because I'm sure I don't have an infection and it wouldn't surprise me if I have what you have now...Just a little clueless about this weird kind of nerve slash inflammation pain slash itchy but kind of not feeling like my skin is crawling...lol sorry I hope that all makes sense...

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  • Posted

    Hi, I was diagnosed with urethral syndrome over 20 years ago. It comes and goes at various times of stress. I used to take oxybutinum (not prescribed anymore linked to Alzheimers). So, I always have Vicodin on hand and I never take a full pill...just a quarter. Anyway, I struggle with migraines and sometimes depression. I just started taking Effexor for the migraines and it has triggered my urethral syndrome. I tried many anti-depressants in the past and they either trigger my urethral syndrome or headaches. What to do?
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