A woman has spoken about her agonising condition which leaves her needing the toilet 60 times a day and in burning pain.
Jenna Thompson, 31, was diagnosed with interstitial cystitis after hundreds of trips to her GP around 13 years ago.
The painful condition, which causes her bladder to swell up, often leaves her totally unable to walk or stand up.
In her own words, Jenna, a journalist for the Hull Daily Mail , spoke about her life living with the debilitating condition.
"I was 18 and at a music festival when I first noticed something was wrong.
For those of you who have ever had cystitis, you will know the symptoms are unmistakeable: that urgent, desperate need to go to the toilet RIGHT NOW, and the burning pain that comes with a trip to the loo.
It’s horrible to feel that way when you’re in the comfort of your home, but at a festival, where you’re sleeping in a tent, and the only toilet available is a dirty Portaloo, is not an ideal place to be suffering.
After trying to tough it out, I eventually gave up and went home early.
Usually a bout of this unpleasant infection can be cleared with plenty of water and some antibiotics.
But for me, it was the start of an illness that has lasted 13 years so far and will likely be with me for the rest of my life.
Despite antibiotics, lashings of water and a tonne of cranberry juice (which I would later realise has the opposite effect on my condition), the symptoms simply didn’t budge.
In fact, they got worse. Doctors were sympathetic but just kept handing me dozens of different antibiotics to try and find the one that would cure me. Little did they and I know that nothing would.
At the height of my illness, I was pretty much housebound and going to the toilet up to 60 times a day.
Each time I went it would sting and burn, but that pain was nothing compared to the feeling in my bladder as it (sort of) filled up; a deeply uncomfortable pressure that makes it almost impossible to sit down or walk, interspersed with stabbing, sharp bursts of pain that took my breath away.
It took two years of these symptoms and hundreds of trips to the GP and hospital – including some extremely painful tests and exploratory surgery – before I was given a diagnosis of interstitial cystitis (or IC, sometimes referred to as painful bladder syndrome).
A chronic, long-term condition, the NHS describes IC as “poorly understood bladder condition that causes long-term pelvic pain and problems with urination” that can have “a significant impact on your lifestyle, work, emotional health and relationships”.
Perhaps it is poorly understood because, as with anything relating to going to the toilet, people don’t talk about it very much.
The only time I have seen any mention of it in the media was a short segment on Embarrassing Bodies (which really makes you feel better…) and an article on a national newspaper website which described it as simply cystitis (it is so much more complicated than that).
Bladder Health UK says “bladder conditions can be seen as ‘socially unacceptable’ which are not often discussed in public”. It suggests this can lead to social isolation among sufferers.
I understand people’s reluctance to talk about it. I have been a journalist for more than 10 years now and my natural instinct is to write about things, but it has taken a long time for me to be able to find the confidence to speak about it publicly.
But I know it’s important to do so, if only to raise awareness of a condition that people may be suffering from but don’t yet know what the problem is. I know only too well how frustrating and difficult that can be.
Unfortunately there is no known cause and no known cure of IC, and it can be difficult to treat.
Some people find that they see great benefits from following the ‘IC diet’ and restricting what they eat to food that isn’t acidic. However, for others – including me – food doesn’t seem to have a huge impact on the condition. Alcohol, however, is out of the question (although I have been known to indulge – and then regret it completely…)
So far I have stopped short of the ‘last resort’ of treatment, which is having my bladder removed completely – an extreme measure which, at 31, I’m not ready to take just yet.
In general my condition is now fairly well managed. It has taken a long time and a lot of different treatments to get to this point, and it is largely thanks to the incredible team at Sheffield’s Royal Hallamshire Hospital, who are widely thought of as the best in the business for treating IC. (Special thanks must go to my amazing consultant, Professor Chris Chapple, and specialist nurse Rachel Simmons).
What works for me seems to be a mixture of lots of different treatments. I now take three different types of medication three times a day – one for pain, one to try and stop me going to the toilet so much and one to create an artificial lining in the bladder.
I travel to Sheffield every week or two to have a treatment instilled directly into my bladder through a catheter, and undergo surgery to stretch my bladder at least once a year – most recently in March.
Don’t get me wrong, I am by no means ‘cured’. On a good day, I will still go to the toilet between 15 and 20 times and there will still be a constant nagging pain. It also has an impact on your sleep, as I am woken several times a night by pain and the urge to go to the loo.
And when the condition flares up – which can last from hours to weeks at a time – I will most likely be doubled over in pain, unable to sit, walk or leave the house and the only slight relief comes from a hot bath and some very strong painkillers.
Although it’s hard sometimes, I try to be positive. This is just the hand I’ve been dealt and I have to make the best of it – and there are so many people in the world who are worse off than me.
Thanks to the support of a lot of people, I live a pretty normal life. I have a full-time job I enjoy very much, I love to travel, and have a brilliant boyfriend, family and friends."
If you have any symptoms which concern you, contact your GP.
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