Ruby Rowe’s lifetime of uncertainty before and after her endometriosis diagnosis

Ruby Rowe's years of struggling for a diagnosis were quickly followed by the life-changing impact of finally knowing her condition. Her story is one many women will find painfully familiar.

This was not how Ruby Rowe imagined her 20s.

As a teenager, Rowe struggled with a sense something "just didn't seem quite right".

"I had had fairly irregular periods for most of my life, since they'd started when I was 13," she says.

"But when I was 19, or 20, I went to the doctors because it had been 45 days between periods one time, and that just didn't seem quite right to me."

Blood tests showed nothing abnormal, but Rowe pushed for an ultrasound. It revealed a cyst. It wasn't until years later - well into her 20s - that doctors confirmed the meaning of that cyst.

"When I finally had the surgery, they found extensive endometriosis, stage four."

As well as the cyst, endometriosis tissue had spread to her internal organs, in particular her bowel.

"They [surgeons] basically said, we removed as much as we could, but there was a lot of endometriosis."

Initially, Rowe was mostly pain-free after the surgery, but after about six months the symptoms returned.

Another round of surgery risked doing more harm than good, she was told.

"I was quite scared by the side effects and the possible outcomes that they had talked about. Things like having to have a stoma [an opening in the abdomen to remove body waste] if anything went wrong [and] they said there's a fairly high risk of this going wrong.

"You could end up being medically dependent for the rest of your life and not able to poo on your own. No one really wants to hear that in their 20s."

The far-reaching impact of endometriosis on women like Ruby Rowe is rarely discussed in public. The years of struggling for a diagnosis, followed by the life-changing impact of finally knowing is painfully familiar to many women.

Rowe is sharing her story as part of an RNZ In Depth series, The Deadline, which aims to speak clearly about the realities of the condition, especially the impact on planning for parenthood.

Planning for parenthood

After her endometriosis diagnosis, Rowe was advised to make some initial plans for children, if she was thinking that might be in her future.

In her mid-20s, tests showed she was less fertile than expected for her age.

A private fertility doctor said she should go on the sperm donor waiting list.

But before even considering children, Rowe and her partner have other priorities and goals they want to achieve such as travelling, progressing their careers and buying their first home. Had she not known about the endometriosis, she would probably not even be thinking about having children. It would be something to decide on in her mid-thirties.

"I don't want to be going on a waitlist that I've got no intention of completing once I get to the front of it," she says.

If, eventually, she decides to try for kids Rowe is braced for it to be extremely difficult.

Further surgery will probably be necessary. Fertility treatment is also likely.

It's good that she knows this.

"Because I know that I might be on a slightly faster ticking clock than other people my age who can have children," she says. "But also, that's kind of a curse.

"What if this is my prime time to have children and I just am not ready?

"It's just all this information that just rattles around in my brain [...] It just adds to this whole impossible situation."

For now, Rowe has made lifestyle changes like adopting the low FODMAP diet, which reduces certain carbohydrates that are hard to digest in order to alleviate her symptoms.

"I'll still try [for children] later if that's what I want to do. I'm not ready now and I know that for sure."

The long and painful search for a diagnosis

The burden of uncertainty about parenthood is a sadly familiar emotion for Rowe. For about a decade, she struggled for a diagnosis. She edged closer every few years with additional information about her body which gradually aligned with how she felt.

Several doctors in the public and private system told her not to worry about her symptoms.

One supportive GP helped her to get the scan that revealed a cyst. But on a visit to hospital, it wasn't diagnosed as an endometrioma.

"They initially thought it [the cyst] could be cancerous just due to my elevated levels of CA-125, which is a hormone that's produced in ovarian cancer, but also in response to inflammation. So, because of that it was treated through the hospital.

"But the people who I dealt with at the hospital just assured me that there was nothing going on, this was a cyst that was going to resolve itself."

Rowe was still certain something was wrong.

"I just had to keep pushing and pushing and pushing and I saw two or three different specialists at the hospital publicly."

There's one interaction at the hospital that sticks in her memory, of being asked if she had painful periods, to which she replied, 'no'.

"She [the doctor] said it can't be endometriosis then, despite telling me it was a chocolate cyst [Endometrioma].

"My mum and I did our own research and found that chocolate cysts are almost exclusively related to endometriosis. But, because I didn't have the typical presentation of symptoms, they were not willing to rule that as a possibility."

A specialist she saw privately also assured her that the cyst would just disappear over time.

"And obviously, it didn't."

Medical director at Fertility Associates Dr Simon McDowell says there are lots of cysts that can happen on the ovaries including simple, dermoid, and endometrioma.

There are also hemorrhagic cysts, which are like a bruise on the ovary and can go away on their own.

Dr McDowell, who is also on the clinical advisory committee at Endometriosis New Zealand, says endometriomas can look the same as many hemorrhagic cysts and further scans may be needed.

"If that cyst has gone away, it is probably just a bruise, but if it is still there that would indicate an endometrioma."

It is very rare to have an endometrioma cyst and no endometriosis, he says.

'More honesty' from doctors

It was not until Rowe moved in 2017 that doctors immediately recognised the symptoms, and she received the surgery needed to confirm her suspicions.

"It was so validating to hear that it hadn't all been in my head, that actually, there was something quite seriously wrong," she says.

Rowe says the experiences and perspectives of other women who have had endometriosis have been the most helpful to her.

She just wishes there was clearer information for others in her position.

"I think there needs to be clearer information and more honesty from medical professionals perhaps about what you might expect."