Endometriosis: Rotorua woman speaks out after diagnosis journey, three surgeries

Denise Lockhorst has suffered from an “invisible” disease since she was a young girl. Heavy bleeding, cramps and pain the Rotorua woman has likened to being “stabbed” have caused her to miss family functions, worry for her fertility and lose quality of life. When she found out she had endometriosis after 10 years of pain, she “just cried my heart out”. She is sharing her story to create awareness of the condition so more young girls can get diagnosed earlier. Megan Wilson reports.

At 28, Denise Lockhorst has “never” had a normal menstrual cycle.

After getting her first period at age 10 or 11, she was in “agony” for four years and had “very irregular and heavy” bleeding, but thought it was “normal”.

From August 2018 to February 2020, “I bled for a whole year and a half”.

Lockhorst’s abnormal periods were a sign of endometriosis – a condition where tissue similar to the uterus lining is found outside the uterus

The tissue can form nodules or plaques and can cause extreme pain during periods or ovulation, tiredness, abnormal menstrual bleeding, infertility and problems with the bladder or bowel.

Endometriosis affects an estimated 120,000 people in New Zealand – roughly one in 10 females.

Lockhorst is sharing her story for Endometriosis Awareness Month and encouraged people to “advocate” for themselves.

Denise Lockhorst was diagnosed with endometriosis in 2020 and is sharing her story for Endometriosis Awareness Month. Photo / Andrew Warner

“If you have any kind of pain and heavy bleeding … and you literally have to miss school or miss work because of your pain ... go get checked.

“The more we speak about it … the more, hopefully, young girls get diagnosed earlier or catch it before it gets to stage 4 (severe).”

‘I just thought it was normal’

Lockhorst told the Rotorua Daily Post she “pushed through” the cramps and heavy bleeding because she thought it was normal.

“For the first year and a half of my pain, I actually just cried behind closed doors. Because it’s such an invisible disease … people look at you like you’re okay.”

Her doctor prescribed her a contraceptive pill.

Denise Lockhorst has had three endometriosis-related surgeries. Photo / Andrew Warner

In 2018, when living in Sydney, Lockhorst’s symptoms got worse.

She saw her GP after feeling a “sharp” pain, which she described as “like getting stabbed by the knife”.

Her GP referred her to a gynaecologist, who found a 5cm cyst on her right ovary and a 2.3cm cyst on her left ovary.

Her options were paying $10,000 to have surgery privately, waiting 12 months through the public health system, or returning to New Zealand.

In December 2019, she came home and in February 2020, had laparoscopic surgery at Rotorua Hospital where surgeons removed her cysts and diagnosed her with Stage 2 endometriosis.

“I thought my world was ending,” she said of the moment she found out.

“It affected me and I thought the worst. Infertility … as all young women [do], especially at the age of 22, 23.

“I just cried my heart out.”

According to Endometriosis New Zealand, laparoscopic surgery is the only definitive way to diagnose endometriosis. The surgery also aims to remove endometriosis tissue, cysts or adhesions.

Lockhorst said the pain returned one-and-a-half years after surgery as the endometriosis grew back.

She had a second surgery in May 2022. Her most recent surgery was in December last year.

‘Unpredictable’ condition steals quality of life

Lockhorst is now taking a progestogen pill and has a Merina – a T-shaped plastic frame inserted into the uterus carrying a contraceptive hormone – to “try and slow down the growth” of the endometriosis.

She said endometriosis had taken away “a lot of my quality of life” including missing family functions and the condition was “unpredictable”.

For example, she was well enough to do a powerlifting competition last year and was in pain two months later.

“You grieve what your body can do.”

Another symptom was fatigue: “If I don’t have one nap a day, I’m exhausted”.

Denise Lockhorst wants to create awareness about endometriosis so more young girls can get diagnosed earlier. Photo / Andrew Warner

Lockhorst had most recently been working in kiwifruit orchards but resigned due to another health scare relating to her thyroid.

She volunteered at the Rotorua Hospice shop and was looking to “redirect” her life.

Lockhorst said she had always wanted to help people and was considering support work or healthcare assistance.

“I’ve had amazing surgeons [and] nurses and I want to give back.”

Early diagnosis can be ‘life-changing’

Endometriosis New Zealand chief executive Tanya Cooke said an early diagnosis could be “life-changing” as it meant people could treat and manage the condition.

“For those living with symptoms of endometriosis without the access to care they may need, there may be a significant reduction in their quality of life.”

Cooke said there was a “pressing need” for enhanced research on endometriosis as it was a “very complex and poorly understood condition” in New Zealand and around the world.

Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.