MUM OPENS UP ABOUT LIVING WITH INFECTION – AND THE RISKS OF HAVING SEX

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34-YEAR-OLD mum has spoken of her determination to help others through online support groups, despite battling a rare condition that leaves her dicing with death whenever she and her husband make love.

Sam Deakin, from Porthcawl, has Fowler’s syndrome, which makes it difficult or impossible to pass urine because the sphincter muscle in the bladder cannot relax.

It has seen her go from one extreme – where she would pass water 16 times a night – to needing assistance to go at all.

She currently has a catheter, a tube passed into the bladder to drain urine, and if she and her husband Edward, 35, who she started dating at 14 and is now her carer, have sex, she risks being hospitalised with a life-threatening infection.

She said: “My husband looks after the kids and he is my carer too – he changes my catheter and sorts out my medication and he does all the housework that I can’t do.

“I take my hat off to him. It’s not easy for people to see their partners like this. Not every couple gets through it.

“Edward has been my rock, supporting me mentally and physically. His humour keeps me going and he still compliments and flirts with me despite all of this – which keeps the spark going between us.”

For Sam, who despite her condition, continues to run the family business with Edward, difficulties with intimacy are just one of the many side effects of Fowler’s, which typically hits women in their 20s to 40s.

“I’m never without an infection. My body is always fighting,” she said. “Most days I can’t even chop vegetables for dinner, change the beds or walk for more than five minutes.”

She continued: “All of these activities can trigger a muscle spasm in my arm, which sets everything else off and within 10 minutes, I’ll be having an agonising spasm in my bladder – which is like being in labour.

“I spend five to seven days each month in hospital, hooked up to a drip of antibiotics as I get so many terrible bladder infections.”

Sam, who has two children, Edward, seven, and George, five, said her problems started as a child, when she was dubbed a hypochondriac for complaining of constant stomach pain and water infections.

Hypermobile, meaning her joints were more flexible than usual, and “sickly”, she was constantly in and out of hospital because of stomach pain and water infections.

A keen gymnast from the age of three, she was forced to quit when she hit puberty at 14 because the pain from spasms in her bladder, calves, feet and stomach became unbearable.

“Puberty was the big trigger for me,” said Sam, who uses a mobility scooter and a stick.

She added: “Early on in my childhood, my problems were dismissed as growing pains. But the pain went through the roof when I started my periods at 14.

“I would be taken to hospital and put on morphine. There were days when I could not put one foot in front of the other because of the pain. I always looked pregnant, too, because my stomach was so swollen.”

From puberty onwards, Sam also had a constant urge to pass water – going to the toilet every 20 minutes during the day, at least 16 times at night and barely sleeping.

“I could constantly feel all this heavy liquid sitting in my bladder,” she said.