The struggle of endometriosis

by MINA AMSO 

It can take an average of up to nine years and five doctor visits before a formal endometriosis diagnosis could be made for a woman in Aotearoa, a recent national study has found.  

The study, which looked at 800 participants, the largest of its kind in New Zealand, has revealed that women’s quality of life is severely impacted due to endometriosis, coupled with a delay in diagnosis. Women’s education, career, sex life, whānau relationships and mental health are among most affected. 

Pukekohe resident and St Patrick’s parishioner Shannon Hadrup knew the pain of endometriosis.  

“For me, the pain was right up there. It would be to the point at times where it was so bad, I’d feel like I did want to pass out or I did want to faint. Or I’d come over with a cold sweat and the shakes because the pain was so great.”  

Endometriosis symptoms began during Ms Hadrup’s late teens. Now a mother of three, she clearly recalls her journey. It started with usual period pain, which she said needed extra pain relief. But, as the condition progressed, a lot of the symptoms from which she suffered were more bowel- and intestine-related.  

“I had a lot of bloating, diarrhoea, and constipation, which led me to go and see a GP. Then I went through various procedures to try and get to the [cause] of it and find out why I was having those sorts of symptoms.”  

The tests couldn’t find anything conclusive, and doctors diagnosed Ms Hadrup with irritable bowel syndrome [IBS], which seemed to be the only possible diagnosis at the time. She would endure endometriosis pain for the next five years, before it was properly diagnosed. 

“Endometriosis and associated pelvic pain are often dismissed or not taken seriously,” said Dr Mike Armour, senior author of the study and a senior research fellow in reproductive health at NICM Health Research Institute, Western Sydney University. 

“We know that diagnostic delay for endometriosis in Aotearoa is reducing over time, attributed to a combination of improving menstrual health education via programmes like the menstrual education (meTM) programme in schools, more advocacy, and greater awareness by health professionals — but swift access to appropriate healthcare support is crucial.” 

Currently, women suffering from endometriosis symptoms are waiting around two years before being fully diagnosed. 

What is endometriosis? 

Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of the uterus — the endometrium — grows outside the uterus. Endometriosis most commonly involves the ovaries, fallopian tubes, the tissue lining the pelvis and the intestines. 

Ms Hadrup felt that there was more to it than IBS. The medications would treat diarrhoea and constipation, and it helped a bit, but she felt that the symptoms would go on for months on end, and she believed there was more behind it. 

“I was eating really well and I was following a really healthy diet and I didn’t I feel like I should still be getting these symptoms, because I was trying to adhere to the irritable bowel syndrome guidelines.” 

“It was more than just pain. It was a feeling of awful discomfort that you just did not feel right in your stomach and abdomen area; it’s a feeling that many women with endometriosis attest to.”   

The pain and discomfort kept going. Ms Hadrup, 41, said that the doctor she was seeing at the time told her that they did all the tests they could and there was nothing more to find out. It was then that she changed doctors and things started to change. 

“The [new doctor] had just been doing some reading on endometriosis which was really timely for me.” Having read all her medical notes, the new doctor decided to refer Hadrup to Fertility Associates at Ascot Hospital. 

The specialists and doctors there told Ms Hadrup that the only way to diagnose endometriosis was to have laparoscopic surgery, a procedure in which the surgeon gains access to the stomach through the belly button, without having to create a large incision in the skin. 

She was told she may wake up after surgery having the endometriosis [if any] removed.  This was long awaited good news for Ms Hadrup. 

“That was quite a lot of information to take in. That the surgery is not just about going and investigating, but they could actually end up removing endometriosis if they find it. So, you had to give consent for all these things to happen. I had really just had enough of struggling with what I felt was something else, so I said yeah let’s do it, let’s sign up for the surgery,” she recalled. 

She remembers waking up from surgery that day and sensing something was different. Something was removed. She felt bandages on her body, and thought “whatever the cause of discomfort and bother has finally been removed”. She knew that they found something and that her recovery had begun.  

“Most people might be thinking ‘oh no this means it’s endometriosis’. But I felt relieved that finally I’ve got a diagnosis and now I can move on,” she said. The doctors found endometriosis tissues in her stomach. She later recovered from her first surgery, had another surgery and has recovered since from her symptoms. 

Deborah Bush, Endometriosis New Zealand founder, pelvic pain coach and consultant, said that one in ten women in New Zealand suffer from endometriosis, and more needs to be done to mitigate their suffering. 

“We strongly encourage healthcare practitioners, policy-makers and health services to take urgent action,” Ms Bush said. “Implementing the ‘Clinical Pathway for the treatment and Management of Endometriosis in New Zealand’, launched in 2020, is one clear way to immediately improve health outcomes for all those living with endometriosis and chronic pelvic pain.”  

Ms Hadrup’s journey of living with endometriosis led her to pursue further studies in naturopathic medicine, in the hope of helping other women going through the same condition.  She now homeschools her children while studying and working part-time.