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Pain after urination, not a UTI or STI

Posted , 13 users are following.

maggie00900
maggie00900

Hi,

I'm a 20 year old woman with no other health problems.

My issues first started when I was about 8 years old when there was blood in my urine and it hurt to go. I had a kidney infection which was treated and since then and the age of 16 I've had 2 or 3 UTI's which antibiotics have treated.

When I was 16 I became sexually active and started to get pain after urination. I was put on antibiotics for it and since then have always urinated after intercourse. But would still get the burning sensation after urination every so often.

However it's been three months now and the symptoms haven't gone away. I've been put on 3 different types of antibiotics. All tests have shown negative for infections and samples have been sent to the lab but still not infection and my doctor said everything looks perfect. I've also tested negative for all STI's.

At this stage my doctor told me I will just have to live with it, there is nothing more they could do.

In the past 3 weeks I've also developed a constant urge to urinate even when I don't need to pass anything. It's so strong that I haven't been sleeping and is starting to cause a lot of stress and effect me in all aspects of my life. I also have cramps kind of similar to menstrual cramps but don't have my period. I'm not sure if these could be from me subconsciously trying to hold in the urine because of the pain caused by it?

I saw a different doctor today who referred me to a gynaecologist because it could be endometriosis but he was not sure because that wouldn't explain the superficial burning after urination. He was going to give me medication for overactive bladder but then that wouldn't have anything to do with the pain. I'm on the waiting list no see the

gynaecologist but he said it will probably be

a year before I'm seen.

I really can't live like this for a year. The pain I am used to and can put a hot water bottle between my legs at night which helps a bit. But the constant feeling that I have a full bladder is too much and makes me so uncomfortable I don't know how I'll manage with it for a year and after the year still have no guarantee it will get better.

I've tried changing my diet, cutting out intercourse, drinking more water and cutting out all sugars, preservatives and food colouring but nothing I do helps.

Please if anyone has been through something like this and knows something that worked for you or someone you know please let me know! I'll try anything I just can't continue like this. I've suffered with severe depression in the past due to a traumatic event and I'm starting to feel down in ways I haven't since that time. Anything would be so appreciated,

Thanks

1 like, 19 replies

19 Replies

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  • annabel32122
    annabel32122 maggie00900

    Posted

    Hi there. Did you get any respite? I have suffered this for 9 months and spent all my savings as the NHS are useless. I finally found a doctor called doctor malone who doesnt believe IC exists and thinks this is all causes by hidden bacteria that the NHS doesnt pick up. He put me on hiprex a urinary antiseptic.. 3 weeeks later and symptoms nearly gone bar pain after urination once every couple of days. Am hopefull will continue to improve. His name is Dr Malone and is based on harley street. He is very kind and lovely. If you can get 220 pounds togwther i suggest trying him. Or try to get GP to prescribe. Nhs are hopeless and wont be able to help much im afraid. Avoid nasty surgery investigations which can make pain worse. Good luck!
  • sammy05992
    sammy05992 maggie00900

    Posted

    Hello.  I have the exact same problems.   I also get vaginal infections.  I read on a forum to get tested for ureaplasma and mycoplasma.  I looked those up and HOLY COW.  I’m requesting to be tested for this.  I’ve been feeling like I get it from my husband.  He’s fine.  No symptoms but ever since I’ve been with him I’ve been plagued by BV and urinary issues.  
  • rach04336
    rach04336 maggie00900

    Posted

    Hi,

    I literally can’t stress enough how weirdly relieving it is to see that there’s someone out there with a similar problem to me. I’m 19 now and first started getting these same problems when I was about 15. I get an urgent need to go to the toilet and sometimes have trouble holding it in. I also have pain before and after I’ve been and the pain varies. Depending on how bad it is at the time I do leak a tiny bit after going to the toilet. The pain also makes me feel so uncomfortable to the point where I do not want to be around people and when I am I know I’m being very irritable but just can’t help myself.

    I’ve been backwards and forwards to Drs for years with symptoms of a UTI yet when I’ve sent of samples they’ve all been sent back clear. I have also been tested for all kinds of STIs which again was all clear. The symptoms aren’t always there and sometimes when they are I can tolerate it and other times it’s absolutely excruciating, to the point where I get really bad hot sweats and occasional cold shivers.

    I was referred to a urologist about 3 years ago now and they decided to do a urethral and bladder stretch. The urologist explained that there was nothing abnormal about my bladder. I really thought had worked because for a couple month after my symptoms were tolerable. 

    However it had not worked so I ended up back at my Drs, where they then prescribed me oxybutenin which did not work. So they kept on trying me on different tablets that are used to treat an over reactive bladder, all of which did not work. In total I think I have been on 4 different types of tablets for over reactive bladder and Drs have increased the dosage of these tablets which also had no effect.

    I’m now waiting for my appointment with another urologist to see what they can do this time. 

    The only thing that remotely helps is drinking excessive amounts of water until the pain has gone for a while. I feel like I cannot go out on days out or go away with the girls because I’m scared of my problem coming on.

    I literally spend my days looking up my symptoms to try and figure what’s wrong with me because I feel like the Drs and specialists never will.

    • sammy05992
      sammy05992 rach04336

      Posted

      You must research and demand things.  Be your biggest advocate.   Has a ureaplasma/mycoplasma test been done? 
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