- Nicole Van Nellestyn, 39, from Mandurah, WA suffered excruciating periods
- In 2023, a urologist confirmed there was hydronephrosis in her left kidney caused by endometriosis
- Soon after, Nicole’s left kidney was removed
Here Nicole shares her story in her own words.
Curling up on the bed in my school’s sick bay, I gripped my stomach in agony and waited for my mum, Toni, to pick me up.
Since starting my period at 13, every month I’d suffered excruciating pain.
‘It could be endometriosis,’ the doctor said, explaining it was just bad periods.
He gave me a prescription for the contraceptive pill, which I dutifully took.
While it helped make my monthly pain more manageable, it also made me put on a lot of weight.
So I tried painkillers and hot water bottles instead, but it wasn’t enough.
Desperate to ease the pain and heavy bleeding, I went back on the pill.
When I was 21, I met Daniel, then 20, and we married nine years later.
We were thrilled when our son, Lewis, was born in 2013.
Our daughter, Keira, followed four years later.
Frustrated with how bloated and heavy taking the pill made me feel, I decided, age 33, to go off it for good. It wasn’t long before the agonising symptoms started again.
‘It felt like my uterus was being twisted in barbed wire.’
I pushed on for a few more years but my symptoms became worse.
By late 2022 the pain each month felt like my uterus was being twisted in barbed wire. I suffered exhaustion, high blood pressure, vomiting and recurring UTIs.
Endometriosis is caused when a tissue similar to the lining of the uterus grows outside the uterus.
What is endometriosis?
‘I’ll rub your back for you, Mummy,’ Lewis would say, trying to help.
After one hospital visit where I was sent home with pain relief, my doctor did a blood test. When the results came back normal, I was referred to a urologist.
In January 2023 I had a cystoscopy so surgeons could look at my bladder.
‘There’s hydronephrosis in your left kidney caused by endometriosis,’ the urologist said.
It meant my kidney had stretched due to a build up of urine. With it having only five per cent function, I’d need to have it removed.
He referred me to a gynaecologist, who did an MRI, and I was diagnosed with deep infiltrating endometriosis.
During the scan my specialist found endometrial tissue had grown outside my uterus, into my bowel and was literally strangling my left ureter, the tube between my bladder and kidney, so my kidney couldn’t drain.
I begged for a hysterectomy.
‘Endometriosis has attached your uterus to your bowel. A hysterectomy means you risk losing so much of your bowel, you may need an ostomy bag for the rest of your life. We need to try and shrink the endometriosis first,’ the gynaecologist said.
It can cause severe pain in the pelvis and make it difficult to fall pregnant.
Symptoms can include:
What are the signs of endometriosis?
- painful periods
- pain during or after sex
- abdominal, pelvic and lower back pain
- pain during ovulation, including in thighs or legs
- pain when weeing or doing a poo
- pain that gets worse over time
In May 2023 I started monthly hormone inhibiting injections, which put me into early menopause, aged 39.
We hope the infiltrating tissue will shrink enough for me to have a hysterectomy this year.
My left kidney was removed in August 2023, but a CAT scan has revealed four nodules on my lungs and diaphragm, indicating I may have endometriosis there as well.
Severe pain isn’t normal, and endometriosis isn’t just having ‘bad periods’.
If you believe something is wrong, trust your instinct and demand answers.
March is Endometriosis Awareness Month. Visit nzendo.org.nz
This story was published in 2024.
