The 30-year-old bride was determined to keep smiling as she married Duncan, 31, a window and conservatory fitter, at Lichfield Register Office two years ago but in reality she was in agony.
‘My back was aching, there was a
continual burning sensation and spasms of sharp stabbing pains around my
pelvis, and I had to go to the toilet every half an hour,’ says Emma, a
legal secretary from Burntwood in Staffordshire.
‘I didn’t want anyone to know because
some guests had travelled miles, so I just put on a brave face and
tried to cope as best as I could.’
Emma is one of 400,000 Britons, the majority of them women, who suffer with chronic cystitis, known medically as interstitial cystitis.
The symptoms including pain, urgency, a need to pass water frequently and a burning sensation when passing urine are similar to standard cystitis.
Cystitis is linked to infection, but interstitial cystitis is triggered by inflammation of the bladder wall, which can follow childbirth, surgery or repeated bouts of bladder infections, though sometimes there is no known cause.
While it’s more common in women over 40, it can affect younger women, too.
‘Bacterial infections, auto-immune disease and hypersensitivity have been implicated,’ says Zaki Almallah, a consultant urological surgeon at Birmingham Bladder Clinic.
‘Current ideas suggest a leakage or abnormality in the lining of the bladder, probably caused by a long-standing bacterial infection.’
Unfortunately, patients are frequently misdiagnosed as simply being prone to urinary infections and given antibiotics, which because there is no infection doesn’t solve the problem.
Indeed, Emma believes she lived with the condition for seven years before doctors recognised it.
‘I’m not really sure when it started, but I had several bouts of cystitis when I was younger so it could have been triggered by that,’ she says.
‘I kept going back to my GP, but he just sent me away, telling me to drink more cranberry juice and giving me ridiculous amounts of antibiotics.’
‘My self-esteem is low and I’ve been prescribed anti-depressants. Poor Duncan bears the brunt of this, but he’s an absolute rock,’ said Emma of her husband
Finally, three years ago she was referred to a urologist who carried out a cystoscopy — an internal examination of the bladder with a tiny camera — and this confirmed she had interstitial cystitis.
‘I hoped this would mean that finally I could be cured,’ says Emma.
‘But to my frustration this wasn’t to be.’
Indeed, while cystitis can generally be cleared by drinking lots of fluids or a course of antibiotics, for interstitial cystitis finding a successful treatment often comes down to trial and error.
‘What works for one patient might not for another,’ says Mr Almallah.
‘I think the key is to find a sympathetic and patient urologist who is willing to try different approaches.’
One such approach is intra-vesical therapy, or bladder instillation.
Combinations of medications are flushed into the bladder, which may coat and protect the organ.
Others may help by suppressing inflammation which can happen when urine permeates through the bladder’s protective wall (known as the gag layer).
The procedure is quick and needs to be repeated, initially on a weekly basis, but there is no guarantee it will work.
Emma had fortnightly instillations at her hospital for about two years.
‘It wasn’t pleasant, but you will try anything if you think it will get rid of the pain. Unfortunately, it didn’t,’ she says.
She’s also tried a cocktail of painkillers and other drugs, including Elmiron — a weak blood thinner that is again thought to help build up a resistance in the bladder wall.
The 30-year-old bride was determined to keep smiling as she married Duncan despite having to go to the toilet every half hour during the day
After countless visits to various urologists, it was even suggested her bladder be removed — an operation usually conducted only in extreme cases such as cancer.
Horrified at the prospect, Emma refused and tries to manage the condition as best she can. But unfortunately, over the past 12 months Emma’s health has deteriorated to such an extent that she’s been forced to stop working.
‘I have been on sick leave because I find the pain is so constant and draining,’ she says.
‘It makes me tearful, tired and irritable. I used to ride my horses, but can’t do that any more because it hurts too much which is heartbreaking. I am a strong swimmer, but the chemicals in the water aggravate my bladder.
‘Due to the lack of exercise I have gained weight. My self-esteem is low and I’ve been prescribed anti-depressants. Poor Duncan bears the brunt of this, but he’s an absolute rock.’
The debilitating condition has also affected the couple’s sex life; they don’t intend to try for a family yet because of the morphine patch painkillers Emma wears continually.
Cystitis is linked to infection, but interstitial cystitis is triggered by inflammation of the bladder wall, Doctors don’t know why some women suffer with this condition while others don’t. Now the Cystitis and Overactive Bladder Foundation is helping to fund a new study at Newcastle University that aims to shed more light on the condition.
Last year, researchers took biopsies from the bladders of ten women with interstitial cystitis and compared them with those of non-sufferers.
As Robert Pickard, professor of urology at Newcastle University, explains, scientists now believe that naturally occurring ‘bug-busting’ chemicals anti-microbial peptides (AMPs) may play a role.
These kill bugs in the body, but it appears that in people with interstitial
cystitis, these chemicals are being produced continually even after an
infection has gone.
‘It’s as if the defence system has not been turned off even though the
initial threat has been dealt with a bit like a trigger-happy soldier
firing in the absence of any enemy,’ says Professor Pickard.
He says this may be why sufferers commonly describe their symptoms as
being similar to normal cystitis when their urine shows no infection.
Their bladder acts as if there is an infection causing an inflammation and
all the associated pain and misery despite it not actually being under
attack by bacteria.
‘We think that the normal mechanism by which AMPs are activated may not be working properly in people with interstitial cystitis,’ he says.
‘Part of our work is to find out the switches that control the AMP response. Drugs can then be designed to turn off the response and quieten down the inflammation.
‘We already know some chemicals that may do this, but it is a long process to prove they are effective and safe for humans.’
Unfortunately, interstitial cystitis, though a debilitating and common condition, is largely unheard of and is low down on the list for research grants, says Mr Almallah.
‘I’m excited by the Newcastle study,’ he says.
‘Yes, it is early days, but these preliminary findings could in the next five or ten years lead to a cure.’