Young mum reveals hell of rare bladder condition undiagnosed for 13 years
- Credit: Tayla Collison
For Tayla Collison, what hurt even more than the pain was being told her illness was "all in your head".
From being told as a teenager she was trying to skip school, to being told during university she needed a psychiatric review, it seemed no-one believed her except her family.
Over a 13-year period, doctors tried in vain to discover why Miss Collison kept saying she was suffering from repeated bouts of intense stomach pain.
It was not until January of this year that Miss Collison, from King's Lynn, was diagnosed with a rare and poorly understood bladder condition called interstitial cystitis.
This was real. This was not in her head.
The 27-year-old's ordeal began at the age of 14, when she began experiencing severe abdominal pain and nausea at night-time.
Her mother hoped a quick GP appointment would provide cause for optimism, but instead it added to their worries and frustrations.
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"Initially they thought it might be my appendix," explained Miss Collison. "We would go back and forth but nothing was actually happening to solve it.
Because it was only happening at night-time or in the evenings, they thought it was just me trying to get the next day off school."
A similar pattern continued for three years, culminating in Miss Collison finding herself bedbound. Concerns over the validity of her claims meant she had received little in the way of pain relief.
For unknown reasons, falling pregnant at the age of 17 gave her nine months' respite - before an all-too-familiar agony set in again.
"Bizarrely I had no pain while I was pregnant, but around six weeks after giving birth they came back," said Miss Collison. "Because they had gone away I had almost forgotten about it, but I knew I had felt this type of pain before."
Despite being referred to a gynaecologist, it simply signalled the start of another eight years of horrendous uncertainty.
"Until last year, I was thrown between GPs, gynaecology and urology, but the problem was not going away," added Miss Collison.
"At times the pain got so bad my mum forced me to go to A&E. It was like having a contraction - that was all I could compare it to, so they kept sending me to gynaecology.
"One day I went in with one of the worst bouts of pain I'd had. My blood pressure showed I was in pain and I was kept in for two days. But then, on the second day, they came over and said they couldn't find anything.
"They wanted me to see a psychiatrist. Still I was being told it was in my head. I remember that moment vividly because it was devastating to hear and I knew how horrible the pain was."
Around five years ago, Miss Collison was cleared at psychiatric review, but it was not until 2019 that discernible progress was made on uncovering her mysterious condition.
After showing symptoms of having a urinary tract infection (UTI), she was sent for a cystoscopy where it was discovered her bladder was extremely inflamed.
Told she would need surgery to burn away cells, Miss Collison felt for the first time like there was a light at the end of the tunnel.
Yet again, however, she received a hammer blow at the beginning of this year.
Although doctors were finally able to pin down the source of the young mother's torment, it meant delivering the news she was suffering with interstitial cystitis (IC).
It was "the worst news for someone of your age", Miss Collison recalls being told.
She would likely require a catheter for the rest of her life, a bombshell which led to a steep decline in her mental health.
The deputy store manager was forced to leave her job and is now classed as disabled.
"For seven months this year I was left with an indwelling urinary catheter," said Miss Collison. "All that time I couldn't wear jeans and I found it hard to drive or go out shopping.
"During those seven months my mental health really declined and I became suicidal. I felt like my body was there, but I couldn't do anything. My son, Oscar, was the only thing keeping me going.
She added: "The problem with IC is that you can be fine one minute and then, all of a sudden, it flares up and you cannot move.
"I never wanted to do anything because of the pain. I was in a four-year relationship which broke down; I ended up losing friends. It affected my entire life."
In recent weeks it was arranged for Miss Collison to have a new catheter inserted above her pelvis, allowing her to wear jeans for the first time in a year - something which "seems small but is a big thing for me".
Helping her through a turbulent year has been Bladder Health UK, a charity supporting patients with bladder-related conditions across the country.
Miss Collison is even member of a Facebook group, where there are dozens of other people suffering with IC that she can turn to for support.
"I've been lucky to have a really good family around me, but Bladder Health has been my lifeline," she says. "My dad would be there for me, but he didn't know first-hand how I left.
"There are ladies in the group I can message any time and I have support straight away. That has had a hugely positive impact on my mental health."
Determined to harness her traumatic experience for good, Miss Collison is intent on raising money for the charity - as well as awareness of her condition.
In an attempt to give something back, she and a friend have created a calendar featuring photographs of fellow sufferers, accompanied by accounts of their experiences.
Many of the women, including Miss Collison, are pictured with their catheter bags, thus showcasing the kinds of images she is keen to destigmatise.
"Living with a bladder issue is nothing to be ashamed of," she adds. "I need my catheter to be able to live.
"I want people to know they are not alone, and that there are others out there going through the same thing."
To purchase a calendar for £5, contact Miss Collison by emailing firstname.lastname@example.org or via her Instagram page @my_catheter_and_me. All proceeds go to Bladder Health UK.