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Desperate help needed

Posted , 4 users are following.

Natasha0305
Natasha0305

Hi everyone,

I'm new to this site and even really talking about what's happening other than with my family, but I'm finding my symptoms really difficult to deal with and I was wondering if anyone could help?

12 months ago (just before the the end of my university degree) I started with a UTI, experiencing intense pain when urinating, and excruciating stomach pain.  I could not concentrate and became very anti-social.  As a student I feel I was fobbed off with an unhealthy lifestyle, was sent to the sexual health clinic.  All tests were undertaken and I was diagnosed with an e-coli infection and placed on a 3 day course of antibiotics, which didn't work.  Another 3 days and another 3 days - non of which worked.  I took cranberry tablets, which didn't do anything at all. 

As a side note I was diagnosed with Polycystic Ovary Syndrome when I was 16.

Leaving university I went home to my own doctors and was given Nitrofurantion (50mg daily dose) - the only medication that has provided any relief at all after 3 weeks on the tablets. It calmed down my symptoms enough to make it through day-by-day but I still thought about it each day,

Then followed the procedures, all of which have come back clear:

Ultrasound scan 

Urethra camera procedure showed my urethra was extremely small - so small that the camera couldn't be inserted.  This led to having an operation to stretch my urethra. But the pain started again the next day worse than ever.

Bladder pressure and empty test (was told my bladder had a good capacity)

Sample of bladder wall

During all this I suffered internal hemorrhoids, which I had a procedure for but due to the amount and positioning of them I could not have them removed.

Since taking Nitrofurantion I have had many urine samples, all of which have come back negative.

Symptoms for me are:

I have to drink at least 1 pint of water before I pee otherwise the pain is too much to handle

No pain when peeing but intense pain 5 - 10 minutes afterwards, which continues until the next time I pee

Air bubbles coming out of my eurethra

 Worse when I have drunk alcohol

I don't get up during the night to pee

6weeks ago my dose of Nitrofurantion was doubled. 1 week ago the symptoms came back with a vengeance - I have intense bladder pain all day and now my kidneys are painful. It feels like constant period cramps but in the bladder.  I was tested for an infection last week - it was negative.  No-one has mentioned IC and I don't know if my symptoms lead to this.

If i come off the Nitrofurantoin, or even if I forget to take a tablet, the pain is immense.

All of this has obviously led to a lot of emotional trouble too - I'm very nervous about going to the bathroom, I'm finding it hard to carry on with my job without feeling like I want to cry out in pain and I'm cancelling plans because I know it's going to be hard for me to have a good time and not focus on the pain and irritation,

I also really want to travel and go out and live my life and I feel like this is holding me back,

If anyone is suffering with something similar or has any advice, I would be the most grateful person,

Thanks

1 like, 6 replies

6 Replies

  • jacqui6389
    jacqui6389 Natasha0305

    Posted

    Hi you. Sorry to hear wot ur goin thru. I can realate. How long has this been going on and is the burning constant....
  • natasha47973
    natasha47973 Natasha0305

    Posted

    Hey Natasha,

    I really do understand. When I was 14 I had my first kidney infection and I ended up having exactly the same procedures you've described at 21. My uni years were awful and spent in constant fear of the toilet or just sobbing in the shower.

    Anyway, things have got better. It may not work for you, but here are things I have tried and have helped:

    - trimethoprim (antibiotic - sometimes cures, must take full course of 7 days)

    - D mannose. I SWEAR by this stuff. It's a sugar substitute that sticks to bacteria and pushes it out. No other effect on body (goes straight through). You can buy loads on Amazon. I prefer the powder variety, but capsules are great to take with you. Keep taking them!!

    - warm baths. No bubbles and (sounds awful) but just keep weeing in the water. Relief is amazing. I also drink LOTS of tea (in English, so black tea with milk) and for every cup do tea, a pint of water. This tends to flush stuff out quickly and I feel better afterwards (admittedly I'm usually there for 45 minutes or so!)

    - some US meds are good - I won't mention the name here, but you can google - a large pharmacy chain has their own brand called urinary pain relief maximum strength tablets. There are also meds that turn your wee orange - again Google for these and find them (there are loads and can't think of a specific one at the minute)

    - assuming you've tried powder that allegedly neutralised your wee in the uk? I've found these don't work for me.

    - steer clear of all sugary drinks helps for me.

    - weeing before and after sex and showering straight after sex also helps (even tho I feel like a proper loser as its not very romantic!)

    I can't think of any more, but do try the above. Cranberry tablets has really helped, but they don't resolve a current infection, just prevent one (or it seems for me).

    Good luck - I feel your pain and really hope something in the above helps

    Also go and see a homeopathy doctor. I've heard that sometimes homeopathic meds have helped people when all else fails.

    Hugs from here!

    • Natasha0305
      Natasha0305 natasha47973

      Posted

      Hello fellow Natasha!

      Thank you so much for your response and all the details of what you've tried. Sometimes it's just good to know you're not alone. I spent the last few months of uni crying in my room.. it really is the worst pain I have ever experienced!

      I've looked at a few forums and the amount of times D Mannose is mentioned is incredible. The reviews are fantastic too.. I have just ordered some and hopefully can start that before this weekend. I don't want to get too hopeful as so mant tablets haven't worked but it's hard to ignore all the positive reviews for it. I hope it provides at least some relief,

      I'm not ashamed to say I've been using the bath trick for a few months too.. It does provide a lot of relief although it is painful whilst you're in there! I've never been in for fizzy drinks, I stick with water mainly anyway so that's never been a problem. I would like to go back to drinking alcohol though after months of being off it - I just can't handle the pain it causes for days after!

      Luckily I went to the Drs yesterday and had a very understanding GP who has perscriped me with a full 7 day dose of Trimethoprim - did this work for you? 

      Thank you for your other options, I hope your problem continues to be okay and thanks so much for sharing your experiences with me smile

    • natasha47973
      natasha47973 Natasha0305

      Posted

      No worries! Trimethoprim is the only antibiotic that works for me so fingers crossed! I must say after taking it for years on and off I have now built up a bit of immunity, so I use d mannose as a daily thing and it helps so much. Down side is its not cheap, but don't limit the amount or stop taking it when you feel better as cystitis will creep it's way back in!

      Good luck - I'd be interested to know if it helps. I really, really hope it does and am keeping fingers crossed!

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