“You cannot choose this disease; it will choose you”: New research offers hope for endometriosis

Saniya Singh-Randhawa knew something was wrong when she was just 10 years old. Painful periods were blamed on her appendix, bellyaches, or just bad cramps. However, after years of hospital visits, Singh-Randhawa discovered she was the one in eight women who struggle with endometriosis.  

“Endometriosis affected every corner of my life, from school, work, exercise, sports, relationships, intercourse, using the bathroom, mood swings etc” she says.  

She says the disease affected more than her physical health. 

“My mental health plummeted direly every time I was left with no answers, made to feel like it was all in my head or 15 in a hospital alone.” 

Now 19, Singh-Randhawa hopes new research into endometriosis will help women around New Zealand validate their experience. 

That hope is thanks to the Neurological Foundations $232,198 first fellowship grant, where University of Otago researcher Dr Ashlee Berryman is leading a team to help young women around the country deal with this pain.  

“I think a study like Dr Ashlee Berryman's would really help girls like me in terms of showing the world that it is not all in our head, supporting the self-actualisation needs that come with having such a disease.” 

The two-year fellowship will examine how endometriosis-related pain impacts cognition by getting participants to visit the laboratory twice - once on a low-pain day and the other on a high-pain day.  

Dr Berryman says this is so she can confirm whether or not it actually is the pain that's driving cognitive difficulties. 

Neurological Foundation head of research Sarah Schonberger says the electronic device used in the study, called a Transcutaneous Electrical Nerve Stimulation Device (TENS), could treat pelvic pain and improve cognitive functions. 

“It's a treatment that could actually be implemented in clinics in New Zealand pretty much straight away.”  

Dr Berryman hopes her research will allow for a discreet, portable option for women with endometriosis to be able to manage their pain and improve their overall focus at work and school. 

She said she chose to focus on this area of study as it is one of the most under researched topics in her field. 

“I found that of everything I was looking at, endo was the most grossly under-researched chronic health condition, and its impacts on wellbeing for the sufferer and people's support networks is extensive.” 

Jamie Bidois knows this experience all too well.  

She recounts having symptoms for many years before her diagnosis.  

It included “very heavy menstrual bleeding, fatigue, severe bowel pain - which was sometimes so intense it made me feel like I might faint". 

Bidois thinks the lack of research is down to a wider issue. 

“Women's health is generally underfunded, which probably partly stems from the fact that women's pain is often normalised or dismissed... I strongly believe that if men experienced similar symptoms, there would likely be much greater attention and investment.” 

Singh-Randhawa shares this opinion.  

“The fact that doctors still tell young women that it is 'all in their head’ or there's nothing else they can do proves to me that the lack of research isn't from lack of resources. It is from disregard.” 

Health Minister Simeon Brown did not respond to a request for comment. 

Associate Minister of Health Hon Casey Costello said in a statement that the government is committed to improving the health systems response to women's health needs. 

She noted that the Women’s Health Hub has just been launched to “help women find support at every life stage, including for conditions like endometriosis". 

For women like Singh-Randhawa and Bidois, Dr Berryman's study offers more than a solution to pain, it challenges what they believe is New Zealand's dismissal of women's health.  

“It comes down to awareness and exposure about the disease to ensure more women aren’t and don't stay under the impression that severely painful periods are “normal” and something all women are and should have to experience,” Bidois says. 

The participants are expected to begin the study this week.