Katie Beales began to suffer crippling pain every month from the age of 14, when her first period started, but no doctor could explain what was wrong with her. One told her she must be doing too many sit-ups. She ended up bedridden with chronic pain and only now, at the age of 25 and after major surgery, has she got her life back.
“From my first period the pain was so intense it would make me sick and give me an upset stomach,” she said. “I would be stuck in bed, crying. My mum would say it is just part of being a woman and you are unfortunate, but it got worse and worse and worse.
“I don’t know how many times I went to the doctor in my teens. Literally every month. I was given all sorts of painkillers.”
Doctors said the same thing her mum had, that it was just normal. “I thought how can I get along with this pain? Why do I struggle so much? Am I just a wuss?”
At 15 she was put on the contraceptive pill, which felt weird, she said, since she didn’t have a boyfriend and was not sexually active. But it masked the pain for the time being and she got through school and then university. But she did not want to keep taking hormones, so she came off the pill and the extremely painful periods returned. But she bore the monthly pain and set off to Australia, backpacking with her boyfriend. It got much worse.
“In Australia I was in constant, chronic pain. Even walking was painful for me. I was living in a van with my boyfriend at the time,” she said. Doctors in Australia said it must be a urinary tract infection or irritable bowel syndrome. It wasn’t. “I came to the point where I wanted to go home.”
The visits to the doctors’ surgery began again. “One of my doctors told me to stop doing sit-ups as my pain was muscular,” she said. “They didn’t even link it with my periods. I had nausea, headaches, bloating so that I looked five months pregnant and I was being told I had muscular pain.”
Eventually she struck lucky, she said. One of the emergency doctors she saw asked whether she had ever heard of endometriosis. “I was sent for another ultrasound and it didn’t show anything, but finally I got referred,” she said.
A gynecologist operated on her, found endometriosis, removed it and told her she would now be fine. “Three weeks later, back came the pain.” She was referred to a specialist endometriosis centre, where a second operation took place, which gave three months’ respite. Finally she went to a private specialist and underwent a six hour operation, in which the surgeon removed tissue on her bladder, urethra, bowel, uterus and fallopian tubes.
“On 13 September, I will have my one year anniversary,” she said. “I have some pain but it is so much better than before. It was extremely hard to try to have some form of normal life.”
She works full-time in consulting in central London, although with one day a week at home because she still needs to conserve her energy. “I’m a really ambitious, career-driven person. To have a disease like that was taking away my identity. It put me back and affected my social life and my relationship with my boyfriend. Before the third surgery I was bed-bound for two months. I’m extremely lucky that he has done and continues to do so much for me and is extremely understanding. I’m sure a lot of partners aren’t.”