Painful Burning Sensation In Urethra - No Uti Or Std - Female

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I am a 21 year old female in the UK, and I have been suffering with a painful burning sensation which I believe to be coming from my urethra since September 2014. The pain comes and goes throughout the day, and it will be at its most intense after having urinated, and after sex. At its worst I struggle to walk. The need to urinate has increased but there is no difficulty in going, though I do now most often have two streams when urinating which sometimes will stop and start. On multiple occasions there has also been thick blood in my urine too. 

No UTIs have ever shown up on the paper dip test at my local GPs, though I have had UTIs in the past. I have tested negative to all STDs. I have had ultrasound scans which have shown nothing abnormal. I have had numerous internal examinations by doctors and one by a Gynaecologist, all have said everything looks normal and healthy.  

My GP has had me try at least 6 different types of antibiotics but none have had any effect on me, except for Cefalexin which I took once a day for 28 days, the pain felt lifted and sex was possible again, but 3-4 days after having finished my course I was back to how I was before them.   

I drink plenty of fluids (including cranberry juice) and eat healthy, I don't drink alcohol, smoke, or take drugs. All pain killers have very little effect on the pain, only a hot water bottle sat between my thighs brings any relief. Taking cranberry capsules, and/or cystitis relief sachets has had no effect. 

I am about ready to give up on my local GP, its doctors and the NHS, no matter how many appointments I make and attend no progress is ever made, no tests are ever taken and my request to be referred to a Urologist has been repeatedly turned down, I am only ever told to drink more water and to try a new antibiotic, which I pay for each time, no one seems willing to search and to find out what is causing the pain. Affording to go private is a problem for me though, and so I just hope there is someone out there who can relate to me and give me guidance/knowledge on what to do.  

This pain is now negatively affecting all aspects of my life. 

7 likes, 238 replies

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  • Posted

    hi, l agree in thinking a cystascope is the best way of finding if youve a problem inside the bladder or urethra that doesnt show up in samples xrays or scans. l went on with simular symptoms for a very long time, frequency pain, though not on passing urine, which is more  typical of bacterial cystitus, though not so much intersticial cystitus, which is not caused by bacteria, hence reason for neg samples, i.c. inflammation from unknown cause, maybe allergic reaction or auto immune, it is fairly easily diagnosed by cystascope with bladder wall showing inflammation, sometimes scar tissue, sometimes hunner ulcer, they usually do a biopsy at same time, if posative they treat the symptoms with various meds. Its common for the pain to be worse after intercourse, inflamed area, for me also menustration.  l went down same route as you, l guess many do, gyneacologist, had examinations, laprascope, hormone pills, also ended up paying for gyny consultation, still no diagnosis, by which time gps had put it down to phycalogical hypacondria etc despite near persistent thrush, frequent aneamia, occassiona, bacterial infection, also long course anti bs for that l month. In recent years research has shown some with ic improve with anti bs used as prevetative, they think there could be bacteria deep in bladder wall that doesnt show in urine, usual anti b used is kefalexin, lve used it long term after diagnosis, which l did eventually find a gp who referrred me to urologist who did cystascope. Maybe gps more enlightened now, or jackie is lucky, but many women have suffered years before seeing a urologist for cystascope, l and they put up with too much for too long, as do many for other long term conditiions, you do have to push them, way it is with some gps.  Cant tell you how it made me feel, so much time suffering and affect of lifestyle, partner, social life. Scuse long ramble, bad memories, but with diagnosis and treatment my symptoms reduced by 90 percent, all it took was a simple cystascope, l0min job, under sedation, bit discomfort after, but no worse then symptoms, and hope youll get diagnosis, might not be ic, but cystascope  best way to get diagnosis. Good luck

     

     

    • Posted

      Hi there yes I must of been lucky or the doctor just didn't know what to do about it but I was getting infections when I had just finished antibiotics as soon as I finished tablets the next day infection was back, but they didn't find any reason why so I was given a low dose antibiotic to take all the time as a prevention I just take 1 a night every night been a couple of years now and not had any trouble .x

    • Posted

      Hi Margeret, Initially l was prescribed cimetidine and amitriptylene, l aslo bought l,arginine as reccomended, did slowly improve, it was later on that research showed that using anti bs as a preventative helped a lot of women, placebo,s didnt, so l was prescribed one kefalexin a day, and they seemed to stop any bad flare ups, odd niggly days, but not bad, problem being after 2 yrs or so lve started with nausea daily, gastro enterologist did scope and said bit of inflammation, put on omprazole, but they didnt stop if after 2wks, so came off them and kefalexin to give my system a break from meds, it has settled down a bit, will just take kefalexin if l feel it aggrevated.  But l,m actually due for cystascope next week, ah, l,m telling posters its easy, now l,m near to having one l,m bit oh no, but l need to find out if anythings amiss, so will do it and hope it settles well after it. Julie re research up to a few year ago there was no research at all in uk for intersticial cystitus, theyd to rely on getting it from usa or germany, Also agree with you Mimi, been there worn the tshirt, re phycalogical, hypacondria, and yes l think it is more common response to female,s, maybe because women get pmt, they think its ok to fall back on phycalogical causes for anything that isnt obvious symtoms, infuriating when your suffering and left to it,  l think they are obliged to refer you to consultant if your going private, Hope things have moved on for you by now.
    • Posted

      I'm just now trying to figure out what's causing this burning sensation, especially at night. Also this condition wakes me several times a night. Fees likeI need to pee, then I can't. Sometimes if I wait a few minutes I can urinate but it's usually in two streams. I'll talk to my doc now after I've read some of these posts. I'm thinking it's ikelyna nice case of I. S.

    • Posted

      Hi there,

      I thought I was put up a general post for everyone to read. I posted my symptoms over a month ago and since then I have had a cystoscopy- with nothing major to report and had been referred to see a pain specialist. Honestly, if I could give any advice it would be to by pass all the other specialists and go straight to see a pain specialist. He not only gave me the right medication for my pain (which is lyrica) but also finally put a name to all of this- Pelvic floor dysfunction & Vulvodynia. He also referred me to see a pelvic floor physiotherapist who told me that I have overactive pelvic floor muscles that constantly spams and won't relax, which is why I have constant fire and burning with or without peeing and a tonne of pressure on my bladder. She showed me this through a guided ultrasound and has been educating me on my pain so I can better visualize and learn to desensitize. She will do some internal and external massage to release the right pelvic muscles as well as get me to use vaginal trainers. I can keep you all posted on my recover.

      She also said that this condition is very likely to recover from!!! YAY!!

      So, I understand how real the pain is ladies- bloody hell do I understand!! But if all your testing keeps coming back normal, as each of mine did, then it's neuropathic.

      GO TO A PAIN SPECIALIST!!!

      They treat you so well! Better than any GP or other specialist I have ever seen!

      There is hope for all of us- I promise!

    • Posted

      Hi kristy,

      I am having the exact same issue that you had. I did a cystoscopy and he said everything looked normal but diagnosed me with overactive bladder spasms. I am eating anti acid foods which helps but I'm afraid to have sex because I don't know if it'll make it worse. Did your symptoms ever go away? What did you do?

      Thanks!

    • Posted

      Kirsty.i have had all the tests like yourself everything comes back fine. I have burning when urinating and constantly afterwards!! What is Lyrica how did they diagnose your pelvic floor pain I am waiting for my next gyno app which is ages away but what you have said seems to be the nearest to all my symptoms! I do sometimes need to wee all the time too as the burning pain makes me feel like I need to pee loads I've tried over active bladder tablets and they made no difference to any of my symptoms.  Would appreciate a reply back.  

    • Posted

      Hi I have the same issues! Burning all the time with or without urination. I've had all testing done and everything normal. Did Kirsty answer you or have you found any relief? My quality of life is horrible. I'm a mom to a 3 year old and a 13 year old. I also work full time as well. My husband helps all he can but I stay miserable pretty much sad

    • Posted

      Dana how i feel for you, all of you who are suffering with this ailment. Had this all the time through out my 20s and 30s yet disappeared miracuously  each time i became pregnant so clearly a hormonal thing with me.

      Now hear i am like in my mid 60s and back its come, 3rd attack in two months, two lots of antibiotics only to discover this morning that tests showed nothing, so had no infection at all. Like you burning when and when i dont go but worse after going although the sensation will sometimes occur a few minutes after going. Dr sent off another sample to be annaylised again this morning and given me another lot of antibiotics which im not taking as the dip stick test showed negative. Dr admitted these tests arnt very accurate so many of us being given antibiotics for nothing. Last dr i saw insisted i needed another lot of them as dips stick showed a supposendly infection but came back negative. ! He said if it doens't clear this time come back and they will have start investigations. 1st root i suspect prolapse? having had five kids and now post menapausal as well. I found the use of vagifem pesseries really helpfull with dryness and atropothy but had to quit due to bleeding starting up again.  Dana your obviously not menapausal  as you have a 3 yr old and a 13 yr old. Are you on the contraseptive pill by any chance. It was taking that that was causing my reoccurring attacks im sure of it now. Also caffiene like in tea, chocolate and coffee  can aggrivate the urthrea. Also check your panty liners if you use these as some contain bleach and other irritaiting chemicals , even our toilet paper! The thought of living like this again is very depressing.like you quality of life is misrable at the moment.poor you having to work full time as well.  Hope someone replies to both of us soon  sad

    • Posted

      I am now sure my 'cystitis' is hormonal. I don't know why it took me so long to work it out - though no GP or health articles ever suggested it as an option. I always used to get it before my period. Now I'm peri-menopausal, and managing it well. Stress does make a difference, and being 'healthy' makes a difference: lots of water, bicarb / lemon juice in water to keep acidity down (I know the lemon juice doesn't sound right to keep acid down, but it does), not having too many carbs or booze or coffee. I use a hot water bottle when I have an attack, and I use a little bit of coconut oil up my vagina (sorry to sound course), that seems to soothe the burning. I also use Estriol cream now (like VagiFem), and I think that might help, but it is gooey, and can lead to bleeding. Good luck to you Dana, and Susan! xxx

    • Posted

      This happened to me in 2007 when I was 32. For 4 years I went through this with urinary tract infections and burning with urination or without and miraculously it stopped in 2011. It went away for 4 years and came back in December 2015 starting with a UTI caused from ecoli and had one every month until May of 2016. I started taking dmannose daily and that took care of ecoli in my bladder. Although the UTIs went away the burning and symptoms never did. I got another UTI in October 2016 caused by klebsiella pneumoniae and had one every month until May 2017. The same thing again although the UTI is gone the burning Still Remains. I live practically daily and while trying to sleep with an ice pack between my legs on my urethra especially while I'm working. I do not take any kind of birth control because my husband had a vasectomy in 2014. But I do believe my pregnancies have something to do with it triggering something in my body. I used estrace cream for one year vaginally and it didn't do anything. I want to be tested for pelvic floor dysfunction so hopefully that will be my next move with my Dr. Thank you so much for writing me back as it is so good to know I have someone understanding the pain that I am going through sad I hope you get some relief as well.

    • Posted

      I forgot to mention that I don't drink anything with caffeine in it no coffee Etc I only drink water and I love lemon in my water and on occasion milk I avoid everything like the plague. I did just find out four months ago that I am non-celiac gluten intolerant. My doctor thinks that might have a lot to do with my recurrent UTIs. But we will see I've had no gluten in 4 months. I'm not sure if you've ever heard of that or not.

    • Posted

      Try the Candida diet I suffered the same symptoms even thought it was public washroom toilet paper and would only use all natural baby wipes. I’m at a point now where if I stray from that diet and eat sugar or grains I feel burning but with it I’m fine..honestly changed my life ! 

    • Posted

      How long did you stay on the antibiotics? I did 6 month but pain in urethra came back no infection.

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