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'I wear morphine patches to cope with cystitis'

Living with cystitis | 'How I cope with cystitis'

Living with cystitis

There are two different types of cystitis, bacterial cystitis and interstitial cystitis, and I've had them both. In fact, I haven't been to a concert for years because it's painful being away from a loo for too long.

It started when I was about 18. I had about three bouts of bacterial cystitis a year, where you get that awful burning sensation when you wee. I always needed antibiotics to sort it out, but my GP just said it was part of being a woman!

Then, when I was about 25, I started getting terrible pains in my pelvis and back. It got so bad that I lost weight and couldn't work. I didn't connect it with cystitis, because it didn't burn when I weed.

I begged doctors to help, but none of them could tell me what it was. I was even asked if I had an overactive imagination medically, because I was a nurse!

Finally, I did my own research on the internet and realised straight away I had interstitial cystitis. I asked to be referred to a urologist and he confirmed it.

Interstitial cystitis is where the bladder wall becomes inflamed. It's more severe and longer lasting than bacterial cystitis, and I've got ulcers on the inside of my bladder wall. Unfortunately, there's no real cure, just ways of keeping it under control.

The Cystitis and Overactive Bladder Foundation have been brilliant in giving me advice. Now I avoid acidic foods and some types of alcohol. I take antibiotics every day to prevent infection, and wear morphine patches to help with the pain.

I had a baby in October 2006, so I'm proof that life does go on. I'm even the young persons' coordinator for the COB Foundation. It helps if young people can ask me questions, such as whether they'd cope at the Glastonbury Festival. But people drive me mad asking if I've tried cranberry juice! That does help with bacterial cystitis, but it makes interstitial cystitis worse.
Kat Thomson, 31, Leeds

For more information and advice, visit www.cobfoundation.org

Where to next?

- Facts on all aspects of cystitis
- Users tips on treating cystitis
- Expert advice on treating cystitis

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louise, about 1 month [Offensive? Unsuitable? Report this comment.]

hi kat just read your story its made me fill abit better i have the same simptoms as wat you have had im always at the doctors they r doing more test now the think its ic the sytoms r the same. im really scared though i dont no how to cope with i also suffer from ovian cysts could ic make then worse. is there anythinlk else you can tell me. please can sum1 help me.

Rhiannon, 3 months [Offensive? Unsuitable? Report this comment.]

hi Sarah and Kat, reading your stories have just cheered me up a bit, my symptoms started a couple of months ago, I don't have a disgnosis yet but feel pretty sure it is IC as all symptoms match totally : ( it would really help if we could be in touch? i live in leeds too... Rhiannon x

jill, 11 months [Offensive? Unsuitable? Report this comment.]

hi,i have exactly the same problem as you i have had this for nearly 10 yrs it started with regular cystitus,and about 3yrs ago i had what was like cystitus but not the same i went to the drs over and over again and had pee sample after pee sample taken with no clear ansewers,finally i had a bladder biopsy done and they came back normal just that i had a grossly inflammed bladder,but no medication was given other than diclofenic which give me cronic stomach upset,i am comming to the end of my tether with the whole thing,and just want to feel "normal" again our holidays are put under great strain,not to mention our sex life,i have had antibiotic after antibiotic which do not help at all,they just cause thrush which just aggrvates the whole thing......please please someone help me !!! jillxx

Sarah, 11 months [Offensive? Unsuitable? Report this comment.]

Hi Kat, Just read your story and have hope too! I am 27, also living in Leeds, and was diagnosed with IC in November. I had a bladder distention which i am now recovered from - the pain has eased but still flares up, as it has today - another day where i have to work from home. I am concerned about loosing my well paid online marketing job, but am hoping to have a child within the next year or so which will take that stress away for a while. Do you have information on other vacancies/opportunities with the COB foundation? Thanks again - its good to finally find someone in the UK (and so close in Leeds!) rather than USA to hear from. Sarah

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