Endometriosis Awareness Month: Hamilton woman shares her long journey to diagnosis

Charlotte Hintz, 28, has endometriosis, an inflammatory disease that affects approximately one in 10 women in New Zealand. Photo / Maryana Garcia

The average wait time for a diagnosis of endometriosis in New Zealand is about 10 years. Some women can go undiagnosed for over 20 years. Hamiltonian Charlotte Hinz, who preferred to be referred to by her first name for this story, waited 17 years for answers. For Endometriosis Awareness Month, Waikato Herald reporter Maryana Garcia spoke to Charlotte about her journey to diagnosis.

Since she was 11 years old, Charlotte has experienced “horrific” monthly periods of intense bleeding and “incredible” pain.

For 17 years, Charlotte struggled with the thought that her suffering was all in her head.

“I felt like I was letting everyone down,” Charlotte told the Herald.

“I felt like an awful person.”

It wasn’t until last year that surgery confirmed Charlotte’s pain was real and it had a clear source. She has endometriosis, an inflammatory disease that affects around one in 10 women in New Zealand.

Endometriosis occurs when tissue similar to the lining of the uterus (endometrium), is found in places outside of the uterus. Symptoms can include intense pain, abnormal bleeding, bowel problems and infertility.

There is no cure.

Charlotte’s journey to a definitive diagnosis of endometriosis began when she hit puberty.

“My first period lasted 11 days. It was horrific. I had to have the entire time off school. The pain was incredible.”

Every month since she was 11 years old, Hamilton resident Charlotte Hinz has experienced “horrific” periods of intense bleeding and “incredible” pain.

But it wasn’t until Charlotte was hospitalised at age 12 for suspected appendicitis that she realised her experiences were far from normal.

“I was vomiting, in extreme pain and on the verge of passing out. And then my period started.”

Charlotte said years of doctor visits and trialling five different types of birth control did not solve the problem. She would bleed for an average of 10 days at a time, almost always accompanied by pain and nausea.

“There was a lack of knowledge around the whole thing.”

As far as Charlotte knew, she was “just getting really bad periods”.

“It made school very hard. It made learning difficult. I felt really embarrassed.”

When Charlotte started work, her struggles continued.

“I had a lot of trouble standing. I had to cancel plans constantly. I wanted to be the best I could be at work but I didn’t feel like I could be.”

Then Charlotte’s symptoms became more complicated.

“I started experiencing gastrointestinal symptoms. At the time I was tested for lactose intolerance, then irritable bowel syndrome.

“I was incredibly anxious about it. I had these symptoms every day and I didn’t know why.”

Charlotte Hintz, 28, has endometriosis, an inflammatory disease that affects approximately one in ten women in New Zealand.

At one point, Charlotte thought she could have cancer.

“I cannot tell you how many ultrasounds I have had. Every single one came back clear. No answers.”

Finally, in November 2023 Charlotte’s pain reached a breaking point.

“When I would lie down I felt like my organs were tugging, just really tight.”

After a trip to urgent care that again ended in disappointment, Charlotte decided to try a different doctor.

“I went in and listed everything. She listened. She sent me to someone at Anglesea Clinic and everything started moving.”

Charlotte remembered leaving the appointment and bursting into tears.

“I was finally getting an actual referral to a specialist and it was incredible relief knowing that I was finally going to get answers.”

The specialist confirmed Charlotte’s symptoms sounded like endometriosis and recommended laparoscopic surgery.

She will never forget the day she was diagnosed in February 2024.

“My surgeon came in and she told me that she found stage 3 endo. She told me that I had multiple adhesions. Both my ovaries were stuck to my pelvic side wall. My bowel was also stuck to my pelvic side wall.

“I just cried. It was just an incredible feeling. I was just so grateful.”

Laparoscopic surgery, performed in hospital under general anaesthetic, is the only definitive way to diagnose endometriosis. The other aim of a laparoscopy is to remove all the endometriosis and adhesions if they are found.

But endometriosis always comes back. One year since her first surgery, Charlotte’s symptoms have already returned.

“I feel like having the diagnosis I’m much more able to deal with it. I know what I can and can’t do. Now I know it’s not my fault. I wasn’t imagining it.”

Charlotte wanted to share her story to encourage other women to seek out the help they need.

“I’m finally in a good place. I want to let people know that this is a thing and you can get help for it,” Charlotte said.

“Knowing what you’re dealing with and being able to get the support for that is so valuable. I don’t want other people to go through the years I went through, if they can get help sooner, it would be life-changing.”

Endometriosis can go undiagnosed for over 20 years

Endometriosis New Zealand chief executive Tanya Cooke.

Endometriosis New Zealand chief executive Tanya Cooke said the average wait time for an endometriosis diagnosis in the country was almost 10 years.

“It is not uncommon for women to live with undiagnosed endometriosis for over 20 years or even to never have it fully diagnosed.”

Cooke said a low number of referrals, a shortage of gynaecologists, the wide variety of endometriosis symptoms and the need for invasive laparoscopic surgery before a definitive conclusion contributed to the delay.

“To make real progress, Endometriosis New Zealand is urging the Government to adopt a National Endometriosis Action Plan similar to what they have in Australia.

“This would improve outcomes for patients including better education and awareness for primary healthcare professionals, training more specialists and providing improved access to treatment.”

Cooke said during Endometriosis Awareness Month, her organisation was encouraging Kiwis to take part in the 120 Challenge to help fund education and advocacy services.

“Your challenge could be baking 120 cookies, running 120km, walking 120,000 steps over the month or switching off your devices for 120 hours. All the funds raised go to Endometriosis NZ.”

A Health New Zealand Te Whatu Ora spokeswoman said sustained high levels of acute demand and workforce shortages impacted planned care.

“Our immediate focus is on urgent patients and those who have been waiting the longest for treatment,” she said.

“We continue to work hard to put in place systems and processes so improvements to waiting times are made.”

She said the Ministry of Health published Diagnosis and Management of Endometriosis in New Zealand in March 2020 and this document was available to all clinicians working in the community.

“Referral to secondary care gynaecological services is only advised if the patient has uncontrolled symptoms that have not responded to treatment options in primary care.”

Maryana Garcia is a Hamilton-based reporter covering breaking news in Waikato. She previously wrote for the Rotorua Daily Post and Bay of Plenty Times.