Urethral syndrome
Posted , 15 users are following.
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.
0 likes, 16 replies
susan556 rachael07580
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
rachael07580 susan556
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.
kdawg2791 rachael07580
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.
rachael07580 kdawg2791
Posted
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.
jared8423 rachael07580
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...
answershelp kdawg2791
Posted
I know it has been years and you probably do not pay attention to this. But if you see this, can you tell me if you found a solution? I am going through the same and I am almost falling into a depression. I hope you found a solution. and that you are feeling great. Thanks!
Gomer44 answershelp
Posted
good morning,
yes its been a long time since I've been on this sight. could you be more specific about what you would like to know and i will be more than happy to help you in any way I can
answershelp Gomer44
Posted
A summary:
Thank you so much for replying. Nobody feels comfortable talking about this. My first symptom was a fainted soreness just under the head of my penis. I would only feel it when I touched it. After a couple days burning sensation while urinating, I got put on Bactrim. During the Bactrim course I noticed blood in my Urine and the area that was sore in my penis was now hurting. I went to the ER and they tested me for everything to include STDs and nothing. They gave me a shot of Ruciphen 250 and Acythromicin 1,000 mg and sent me home. I was lucky to see an urologist on December 23, and he put me on Doxycicline for 10 days. My pain while urinating went away and no more blood. However, like a day after feeling better the urethral inflammation started as well as the sensation of having to urinate more often, also, the tip of my penis feels inflamed 24/7. I do not feel the urge to urinate as much but the inflammation of the Urethra will not go away. I wonder if so much antibiotic did this. I am waiting on results for CT with contrast and the Dr. wants to perform a Cystoscopy on Jan 20. I am concerned about that procedure. I am so mentally defeated, this has brought me down to isolate myself from the world.
keith99684 answershelp
Posted
Im so glad i found this, Im dealing with the same issue, my problem started 5 months ago and its been pure hell, the first few months I was positive but im now in depression worried this hell will never end. I would love to read about what works and what doesnt for everybody, hopefully saving all of us time coming to some sort of resolution.
My issue started with frequent urination, and quickly became bladder pain and urethra burning. I went to multiple doctors/urologists that just wasted time. I tried Doxy, Cefro and Levofloxacin, Doxy and Levofloxaxin both helped reduce the pain and the burning kind of went away. I now have inflammation which is more noticeable after i use the bathroom and I feel it at the tip and my prostate (rectal area).
I had a cystoscopy done (horrible experience) and I believe if you guys have one theyll notice the same thing. The urologist found patchy erythema (inflammation) through out the urethra and on bladder. He said I had no tumors, strictures or bladder stones. I was put on steroids which kind of helped (I could tell they reduced some inflammation because my urine stream was stronger and the urine didnt come out at a sideways angle). Unfortunately after the steroids ended the inflammation came back and Im on a second steroid pack (which doesnt seem to be doing anything).
I had a MRI yesterday on the pelvis and will see what they find. I had a ultrasound which came out clear, urine shows no bacteria or blood, cbc and all blood tests normal. uric acid test also normal. My fear is this is a permanent issue where the body cant replace the damaged lining in the urethra (or it is attacking it causing the inflammation). I feel for you guys because I myself am going through this and am struggling to find a way back to normal. Please post, its tough trying everything as one person but maybe if we share our experiences well come up with something
wee78396 Gomer44
Posted
hey man i would really like a response from u if you could please
rishabh123 keith99684
Posted
hi Keith, i have exactly the same issue. no infections all tests clear. cycstoscopy found red patchy inflamation throughout the urethra. doctor suggested trying steroids I have not started yet. wondering if you have had any solution or mdicine that worked?
martha41901 rachael07580
Posted
jemma1109 rachael07580
Posted
Hi all,
Can sympathise as I am going through this. Started off thinking it was a simple bladder infection so was prescribed antibiotics. After 3 lots of antibiotics having no effect, was booked in for an MRI of the bladder. That came back all clear. I have pain in the urethra pretty much every day, at times not bad but other times unbearable. Doctors don't know what to do as there is no bacteria or medical reason why this is happening that they can find. The thing that really seems to trigger it is alcohol which I am now cutting out, but even if I don't drink I'll still get pain. I haven't found any treatment that helps, I've been taking d mannose for months, avoiding caffeine etc. I do wonder whether I should try cutting out anxiety meds in case they are having some effect but reluctant to do so.
jane54770 rachael07580
Posted
I've had something like this for 5 years, I think that this may be from a localized autoimmune condition if there's no infection. That's what I'm leaning toward in my own condition at least. I've found dietary changes to be quite helpful in this regard. Good luck!
kay46689 rachael07580
Posted
Hello Rachael and others on this forum.
I will share what I have discovered from having Urethral Syndrome.First had this twenty four years ago and it lasted for 5 years. Returned recently triggered by constipation and now it has cleared.
I went through the same back and forth with doctors, specialists as many of you have, dilation, and a gyny operation I didnt need.Please be aware this condition can go! I was prescribed Oxybutynin and while it can be useful for pain relief it can also cause on going problems as it is really designed for incontinence. I found it better to take half a tablet or even a quarter so these problems did not arise, in the end though it was not clearing the condition. For those who do not have inflammation it is likely muscular, the urethra is a powerful muscle and can spasm and tighten. Valium can release this through relaxing your whole system. If it is going to work you will only need to take it a couple of nights. Dilation can work for some people sometimes. I know of one person who takes amitriptilyne who says that works but I wonder what will happen if she stops taking it. Bowels can play a big part in this condition so if you are not regular or straining this could be your problem. Drink enough water or herbal teas.I received some relief from an osteopath who worked on the pelvic area. Consider osteopaths, massage therapists.
Strong chamomile tea also helps to relax this area. For females one of the big causes I discovered is "holding your stomach tight" it can set this condition off or at least make it worse. Check in regular with your stomach to see if this is something you do. If your cause turns out to me muscular do not do kegels pelvic floor exercises as this can worsen the condition. If you do have inflammation I would recommend seeing a naturopath/herbalist. Either way whatever your cause the greatest thing you can do is find ways to relax your whole body that might mean finding someone who can lead you through that (often we think we are relaxed but we are tightening and holding somewhere) For some people running, biking can be the cause of this condition and for others it is a food allergy. I found a video today on you tube Self treatment for pelvic pain | Connect PT I have not used this method however it may be useful. You can find a way out of this, it means new exploration with the focus on you taking responsibility and trusting yourself (not the doctors who do not understand, not saying thats all of them) to bring yourself out of this. Had a urologist that likened my urethral pain to his tennis elbow. Ridiculous, he did not have to pee out of his elbow, or use his elbow to be intimate (or maybe he did lol) or to menstruate and he can move it around and apply soothing cream. This condition can really depress a persons life force and leave them with thoughts of "Oh no I am going to have to live with this my whole life" That thought in itself can stress and tighten the whole body. Start today to release that thought if you can and bring in that trust that you are the one that can heal this and you shall discover the way for you to do that.If you have any questions I shall respond. Otherwise all the best to you and your self healing whether in partnership with another or on your own. IT CAN HAPPEN and quickly when you find that one thing that works for you.