Daisy Warren-Brown used to spend three weeks a month in debilitating pain.
Now she is fundraising for two strangers to get the surgery that helped get her life back.
“I couldn’t move. I was on the couch. Mum would have to come around and there was nothing she could do,” Warren-Brown told the Bay of Plenty Times.
Warren-Brown is one of about 120,000 New Zealand women who suffer from endometriosis, a condition where tissue similar to the uterus lining is found outside the uterus.
Symptoms can include extreme pain during periods and/or ovulation, tiredness, abnormal menstrual bleeding, infertility and problems with the bladder or bowel.
For Warren-Brown, the journey began when she was 12 with irregular and painful periods. Following her doctor’s advice, she went on the pill at 17, which helped to alleviate symptoms for some time.
“Then in 2020, we had gone over to the UK and I got to the point where I wanted my body to go back to doing its thing, to go natural, so I decided to come off [the pill],” Warren-Brown said.
Within a few months, Warren-Brown was experiencing so much pain she could hardly move.
“Once, the pain kicked in when I had just got home. I commute to Waikato. If it caught me while I was on the road or when I was at the office, I would be screwed.”
Warren-Brown said she was taking codeine at the time to manage the pain.
“My quality of life was terrible. I had loads of anxiety when I went out because I didn’t know when it was going to start.”
Warren-Brown decided to learn more about her condition and the treatment options.
“I ended up going to the doctor and asking with a really strong attitude. I said, ‘I want to explore this and I want you to do it for me now’. And she was amazing.”
An ultrasound found a cyst on one of her ovaries. Five months later, the cyst had doubled in size.
Warren-Brown was told surgery was the best option.
According to Endometriosis New Zealand, laparoscopic surgery is the only definitive way to diagnose endometriosis. The surgery is also aimed at removing endometriosis tissue, cysts or adhesions.
“The public waiting list meant a year-and-a-half wait. Private surgery is upwards of $16,000 and the price varies depending on where you are in the country.”
Warren-Brown was fortunate enough to get private surgery. But endometriosis has no permanent cure.
“I came out of the surgery understanding the reality of endo is that it comes back and it can spread,” Warren-Brown said.
“There’s nothing you can do to stop it.”
Warren-Brown said her health improved after surgery, but the pain returned.
“So I still have pain. But I’m more educated. I know what is going to happen so I can prepare.
“My quality of life has improved [from] what it was. Knowing it’s going to spread again is scary, but knowledge is power.”
Warren-Brown hoped sharing her experiences would help people become more informed, whether they have the condition or not.
“It’s an invisible illness. You can’t see it,” Warren-Brown said.
“It’s really hard to think that people might think you’re lazy or that you’re putting it on. I think that’s the struggle that women face.”
Warren-Brown encouraged women experiencing symptoms to seek support.
“It’s almost been taboo to talk about it, but there are people to reach out to. Don’t isolate yourself.”
Warren-Brown has been supported by husband Zac Brown, who is now leading a fundraising effort to pay for two women with endometriosis to get private surgery.
“Over the past four years, I have witnessed Daisy in chronic pain every cycle, to the point of her curling into a ball, wanting to vomit and be immobile,” Brown said.
“Since her surgery she still has pain, that’s the s*** part about endo. But she is in far less pain.”
Brown said before he met his wife, he did not know much about endometriosis, but watching her fight it sparked a desire to help.
“The thing that annoys me is the lack of resources available for women going through the pain of endo. Many of them are being told that they just have a ‘tummy ache’ or ‘trapped gas’ and aren’t taken seriously when they are in pain.”
Brown said it was important that women received prompt treatment.
“The public waiting list is far too long, and that is why we are helping two young women skip straight to surgery privately to change their lives.”
Brown has launched a Givealittle page, promising to shave his head for a fundraising goal of $35,000.
“We’ve got our eyes set on two brave young women here on Givealittle, fighting their own epic battles against endometriosis,” the page says.
Warren-Brown told the Bay of Plenty Times she and her husband wanted to have a direct impact.
“Zac found two young girls who are trying to raise money for private surgery, and we’ve started putting the campaign out, and all the money will go straight to those women.”
Chief executive of Endometriosis New Zealand Tanya Cooke said endometriosis was a “complex and poorly understood condition, affecting 120,000 women, girls and those assigned female at birth”.
Cooke said endometriosis patients can experience debilitating symptoms which can “significantly impact patients quality of life”.
She said it was “crucial to research” the condition to help Kiwis living with it.
“We recognise the immense challenges faced by those living with endometriosis and are committed to advancing our understanding of endometriosis, the causes and impact – through research.”
She said most current research available in New Zealand was from overseas and it was “time we invest in more New Zealand-specific research including studies that focus on the experiences of Māori and Pasifika communities”.
What is it?
Endometriosis or endo is a common inflammatory disease that occurs when tissue similar to the lining of the uterus (endometrium) is found outside the uterus.
How many people have it?
Endo affects 176 million individuals worldwide in their reproductive years and about 120,000 people in New Zealand.
What are the symptoms?
In most cases, there can be symptoms including extreme period pain, pelvic pain and subfertility or infertility. In other cases, there may be no obvious symptoms and a diagnosis is made during the course of medical procedures for other reasons.
Source: Endometriosis New Zealand.
Editor’s note: Zac Brown is a media specialist at NZME.
Maryana Garcia is a regional reporter writing for the Rotorua Daily Post and the Bay of Plenty Times. She covers local issues, health and crime.
Multiple people have seen the different listings and paid deposits or the full price.