1/27/2010 – Bladder Clinic features in SHE Magazine about Painful Bladder Syndrome/ IC “The Burning Issue”

Summary of SHE Magazine article January 2010 “The Burning Issue” which highlights an Interstitial Cystitis/ Painful Bladder Syndrome sufferer’s journey from initial symptoms in 2001, to eventual diagnosis eight years later.
Mr Almallah was not the sufferer’s Consultant and did not participate her care, however he was asked for his impartial advise and comments to supplement the article.

Sarah’s symptoms began in Spring 2001 when she had to keep urinating during the night and after urination experienced aching pains. Hoping it was a minor problem that would rectify itself, she delayed visiting her GP until a year later as the pain became more frequent and severe.

By this time, as well as being in agony both before and after using the toilet, Sarah’s other symptoms now included painful and heavy periods which suggested she was suffering from endometriosis. Sarah was therefore referred to a gynaecologist by her GP who diagnosed endometriosis. She underwent a series of operations to remove endometrial tissue which rather than alleviating the pelvic pain, actually made it worse.

Sarah’s daily life was ruled by checking in advance where nearest toilets were and worrying about interrupting work meetings by having to use the toilet and afterwards being in intense pain. Nights were ruled by being desperate to sleep but not being able to.

Although Sarah did have endometriosis, it was clear that there was another underlying cause of her severe pain. Although her GP and Gynaecologist were sympathetic and other treatments were tested- implants to stimulate the menopause, pills to imitate pregnancy, being fitted with a coil and homeopathy- nothing was helping her severe pain.

By 2005 Sarah had agonising pelvic pain for three weeks out of four each month, with symptoms at their worse the week before her period. By this point she was exhausted from long-term sleep depravation caused by pain keeping her awake- as well as the anxiety as to what was causing the intense pain- it being so severe she thought bladder or bowel cancer may have gone undiagnosed. She was no longer able to have a sexual relationship with her husband due to the unbearable pain it caused. One gynaecologist gold her she had irritable bowel syndrome and “eat All Bran, listen to classical music, get a grip and relax!”

By May 2008 Sarah underwent her fourth operation to remove more tissue- however her gynaecological surgeon discovered there were no new endometrial deposits and recommended that she be referred to a urologist. By this time she had reached her lowest ebb- she had gained a stone and a half in weight due to being too unwell to exercise and dreaded potentially having to leave her responsible job as a senior researcher and team leader. This caused financial concerns and co-incided with her being signed off from work for 3 weeks.

Reaching this lowest point whilst waiting for her referral to see a urologist Sarah became pro-active and researched the internet where she came across some information on a British charity called the Cystitis and Overactive Bladder Foundation Charity (COB Foundation) and found that the symptoms detailed for Interstitial Cystitis matched those she had been suffering with for several years.

The answers she had been seeking for years were revealed and she felt she had found the correct diagnosis from which would mark the beginning of her recovery. She followed the dietary advice given on the COB website after reading that fifty per cent of sufferers have reduced symptoms when changing to low-acid foods and drinks. Within a week of making changes reduced Sarah’s symptoms by sixty percent”.

By January 2009 Sarah saw a consultant urologist who confirmed a diagnosis of Interstitial Cystitis, and continues to follow a low- acid diet (obtained from COB website) and limits her fluid intake to 1.5- 2 litres a day.
Visit the Cystitis and Overactive Bladder Foundation at www.cobfoundation.org, or call 0121 702 0820.

Click here to view the full version of this article, published in SHE Magazine, January 2010

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