Endometriosis: Pain so bad I wanted to die was not just ‘bad periods’
By Kathryn Perrott
Updated 20 Mar 2016, 8:18pm
Endometriosis is a debilitating chronic disease affecting one in 10 women, but few know what it is and many go undiagnosed for up to 10 years. For Endometriosis Awareness Month, Kathryn Perrott shares her story.
“Do you think pain could be an emotional thing for you?” the doctor asked.
I sat, crippled with searing stomach pain, in the office of a GP I managed to get an appointment with at the last minute. And now I was fighting the urge to strangle her with her stethoscope.
I didn’t know it at the time, but I had endometriosis — a chronic and debilitating disease when tissue similar to the lining of the uterus grows in other places, including on the ovaries, the fallopian tubes, the pelvic side-wall, bowel, bladder, uterosacral ligaments and in the Pouch of Douglas.
In rare cases, it has been found to grow as far as the lungs and brain.
Endometriosis irritates surrounding tissue and causes severe pelvic pain, inflammation, heavy or irregular menstrual bleeding, scarring and bowel and bladder symptoms.
It is also a common cause of female fertility problems. Up to 50 per cent of women with the disease have difficulty becoming pregnant.
But 10 per cent of women have the disease — so why do I have to explain what it is?
In the past, menstrual health has only been spoken about in hushed tones, leading to a lack of research and understanding of endometriosis, which experts say may have been put down to “women’s hysteria”.
Today, the lack of awareness means it takes seven to 10 years on average to be diagnosed.
It took 10 years for me, during which I was sometimes labelled a hypochondriac and “always sick”.
Although he regrets it now, my dad would usher me off to school, doubled over in pain, saying: “Other girls get their period too you know, and they go to school.”
‘My symptoms became a normal part of my life’
So, I put on a brave face and went to school.
But when I was having a bad day, participating in PE was near-impossible and, an otherwise A-student, it came as a shock when I was marked down for “behaviour”.
When my school nurse saw me coming, she knew to have pain relief and a hot pack ready.
My symptoms became a normal part of my life as I grew older.
My brother knew to quickly bring me a bucket when he found me collapsed on the floor in pain.
My boyfriend knew that when I was having a bad day, our date would involve tea and a hot pack.
When I was in pain so bad I thought I would rather die than feel it for another second, my parents would rush me to the hospital emergency ward, in a process that had almost become routine.
Every time, doctors suspected appendicitis, gallstones or a burst ovarian cyst.
I was put on a morphine drip, sent for several tests and eventually a puzzled and slightly annoyed-looking doctor told me they could not find anything wrong.
I was repeatedly brushed off by health professionals who told me I just had “bad periods”.
Eventually, I gave up, figuring I just had a low pain tolerance and that maybe I actually was a hypochondriac.
But when I was 21, my best friend heard endometriosis mentioned in a podcast and messaged me, saying: “This sounds like you!”
I set off to my regular (and empathetic) GP, who had tried for years to figure out my symptoms, but now armed with new information, the pieces started to fit together.
She referred me to a gynaecologist, who said my symptoms sounded like endometriosis and booked me in for a diagnostic laparoscopy — the only way to diagnose the condition.
‘I was told I had textbook endometriosis’
A telescope-like instrument is inserted through incisions into the stomach to look for signs of the disease, and a biopsy is taken to confirm.
Waking up from the procedure, I was told I had “textbook endometriosis”.
I was so happy to finally have an answer — but devastated to find the condition is incurable and I would need surgery every two years to help treat the symptoms.
I was told I needed my first surgery as soon as possible, so booked it in during my university holidays.
Warned of the possibility of a hysterectomy if the growths were bad enough, I was terrified.
Thankfully that was not necessary. My diseased peritoneum was entirely removed — it grows back — and endometriosis was cut off various areas in my abdomen.
The surgery aims to give temporary relief from symptoms, and to slow down the endometriosis’s growth.
Talking about it helps other women
Almost two years later, my symptoms are back and I have been told I will need another operation soon.
But this time, I know my disease a lot better.
I know the value of getting second opinions from GPs, using support networks and becoming an “expert patient”.
I am consciously keeping myself as informed as possible about endometriosis — and telling others about it.
Other women are speaking too.
At Endometriosis Australia’s Brisbane event for Endometriosis Awareness Month, I heard other women recount their stories, and they were almost word-for-word like mine.
Maybe if we keep the conversation going, young girls will be diagnosed and given the necessary tools earlier— not just brushed off by another doctor.
For more information visit Endometriosis Australia. Kathryn Perrott is a producer at ABC News Digital.