Today I want to warn all young women to be aware of the symptoms of endometriosis. My daughter was one of those one in 10. I don’t want any other young woman to go through what my daughter went through because of the failure to diagnose the disease early enough to prevent life-changing surgery. It took until she was in her 30s before a doctor finally said those words, ‘You have endometriosis.’
Kylie had all the symptoms from high school age—heavy periods with extreme pain, short cycles, bloating, spotting in between, pelvic pain, constipation and migraines. After five failed attempts to carry out a pap smear test she visited a gynaecologist, who made her feel as though she was overstating her symptoms. She was married by then and had continuous problems with contraceptives and sexual function—the bleeding spoken about—but was told that she was normal and to just have a baby. Even though she knew she wasn’t imagining the symptoms or making them up, she believed she just had to toughen up.
Her symptoms continued to worsen over time. Changes to her bowel and bladder emerged. She developed a fistula in her bowel. A second gynaecologist did exploratory surgery. A third gynaecologist recognised the images from her last day surgery and was concerned about the possibility of irritable bowel syndrome, so did his own exploratory surgery. He was the first one to say to her: ‘I’m so sorry. No wonder you are in so much pain. You have the worst case of endometriosis I’ve ever seen. Unfortunately, it’s been so aggressive it has attached itself to your bowel and is strangling it.’
To Kylie the scans looked like dozens of cobwebs overlapping each other attached to her insides. Multiple consultations and tests followed, as did medically induced menopause, her hair falling out in clumps and multiple surgeries to remove both tubes and an ovary. By March 2014 she was working with a colorectal surgeon and her gynaecologist, who conducted a bowel resection to remove what was affected by the endo.
Post op Kylie developed an infection at the drain site that camouflaged other very serious internal complications. She was rushed into emergency with excruciating pain, a skyrocketing temperature and faeces excreting through her urinary passage. She had surgery in Perth and spent 11 days in intensive care, and we nearly lost her.
She had peritonitis, septicaemia, a lower bowel infection, a burst appendix and her heart went into fibrillation when a PICC line was being inserted. She had 1,500 internal staples, 15 tubes inserted and three external colostomy bags, one of which was an ileostomy, and that jigsaw of scars on her body. Her weight fell to under 40 kilos. She subsequently spent weeks having three bags changed every day at our local Harvey Hospital by some wonderful caring local nurses. The first attempt to reattach her bowel and remove the ileostomy was not possible. She went into the surgery hoping it would be gone but woke up post-surgery still with the ileostomy. It was just the latest test of her mental and physical endurance.
Do I have to tell you what it felt like to sit beside her bed for 11 days, willing her to live and telling her just to breathe—’Breathe, sweetheart. Just breathe, Kylie.’ Do I have to tell you how much pain she’s been through? Do I have to tell you it shouldn’t have come to this? I say to every young woman: take these symptoms seriously. Get a second or third opinion, if necessary. I say to GPs and gynaecologists: I know the complexity of the diagnosis, but please take seriously every young woman like Kylie who presents to you with these symptoms, young women whose instincts and symptoms are telling them there is a problem.
I’d also like to say how proud I am of my daughter. She suffered immeasurably. But, through it all, she never gave up, even when she was at her lowest in that intensive care bed, when we didn’t know whether she would survive or not. One day she could not even lift her head off her pillow to kiss her father’s hand as he left her bedside—that is how low she was. But she wanted so desperately to live. She fought to live. I am proud of her unfailing courage, her internal personal strength and her sense of humour.
It is not over for Kylie. It is not over for you women sitting here today. There is no cure for endometriosis. Like the member opposite, I’m very pleased to be an endometriosis ambassador. I urge every young woman to take these symptoms seriously and for every GP and gynaecologist to do the same.