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I thought this might be of interest from today's paper: I HAVE interstitial cystitis. The trouble started four years ago after a prolapse operation — I caught a bug while in hospital after having a catheter. I was told I would just have to live with it, but it seems to be getting worse. My consultant says the next option is surgery, which I don’t want. I’m so sore I can barely sit.
Mrs E. Doyle, Bridgend, Mid Glamorgan
Unfortunately, this is a condition that we don’t fully understand and an effective treatment may prove elusive.
First, a word about the nature of the condition. It is not the same as cystitis, which is a urinary tract infection that usually lasts only a few days and is caused by bacteria.
With interstitial cystitis, the cause is not clear. However, the symptoms are similar — typically, bladder pain (which can be anything from mild to severe), along with an urgent or frequent need to empty the bladder (though, unlike cystitis that’s caused by an infection, with interstitial cystitis the urine is clear).
You may also feel pain, pressure or discomfort anywhere between the lower abdomen and the urethral area. It can severely affect quality of life. Studies show half of patients can’t work full-time and 70 per cent have disturbed sleep.
Interstitial cystitis may develop gradually or appear quite suddenly — often after a urinary tract infection or operation — and last for weeks, months or even years, as in your case.
There is no single test for diagnosing it. The clues are in the symptoms and the lack of any abnormalities in urine tests (with standard cystitis, a urine test can be given to check for the bacteria that caused the infection).
In fact, a key point about inter- stitial cystitis is that tests consistently fail to detect infection or any other identifiable cause.
In that respect, the condition has much in common with fibromyalgia and irritable bowel syndrome. As with those conditions, while it is emphatically not a psychological disorder, it can be worsened by stress or depression.
Debilitating: The condition can severely affect quality of life, with studies showing that half of patients can’t work full-time and 70 per cent have disturbed sleep
Essentially, it is a chronic pain syndrome. As there is no cure, the aim must be to relieve the difficult symptoms.
The first step is education and support from a doctor who understands the nature of the complaint and who is committed to helping you by trying different treatments, informed by your own concerns and expectations.
I must assume that you are already familiar with the self-care options: applying heat, such as a hot water bottle, to soothe the area; avoiding caffeine, alcohol and any foods (such as highly spiced ones) that can irritate the bladder; and seeing whether it helps to increase your fluid intake or restrict it (but avoiding the extremes of either).
In your longer letter, you mention taking bicarbonate of soda (baking powder), which does have a long history of use as an effective home remedy for a number of conditions. However, there is no evidence it is of value in interstitial cystitis.
That other time-honoured cystitis remedy, Mist. Pot. Cit. (potassium citrate), which renders the urine alkaline and may reduce the sting of acute cystitis, is of no use with inter-stitial cystitis either.
The next option is physio- therapy from a specialist in this area. On examination, many patients are found to have pelvic floor muscle tenderness. Studies show that physiotherapists trained in pelvic soft tissue rehabilitation can be helpful.
Management: It is a chronic pain syndrome, so the aim must be to relieve the difficult symptoms long-term
I can only hope this skill set is available in your local hospital, though you would need to be referred by your specialist.
Medication typically begins with amitriptyline, an anti-depressant which, when given in small or moderate doses (10mg to 75mg each night), acts as a painkiller.
Other drugs that can prove useful are antihistamines, Elmiron (generic name, pentosan) and even Viagra (sildenafil), though exactly why these very different groups of medication are effective for this condition isn’t clear.
If these don’t help, doctors may carry out a cystoscopy — an inspection of the bladder using a thin, flexible tube — at which time they then perform a hydrodistension, where the bladder is filled with water to stretch the bladder wall. This provides long-term relief in some patients, possibly because it affects the nerve endings.
Other, much more rarely used options are little better than experimental. One is cyclosporine, a drug used in early kidney transplants to prevent rejection. Another is surgery to make a new bladder using a section of bowel.
Such procedures carry a high risk of complications. Given your understandable reluctance to have surgery, my advice is that, above all else, you need to be referred by your GP to a specialist, probably a uro-gynaecologist, with a particular interest in this complex condition.
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