Endometriosis: We deserve the right to live healthy, informed, fulfilling lives

A DEBILITATING health condition which affects one in ten women and a staggering 180 million sufferers worldwide will be in the spotlight in Cork on Thursday, June 22. There is currently no cure for endometriosis.

University College Cork will be the venue for the special event, hosted by FemTech Ireland. There will be an exclusive screening of the US documentary Below the Belt which was produced by a star-studded team, including Hillary Clinton, and tells the story of four women searching for answers to their mysterious symptoms.

This will be followed by a panel discussion and refreshments. It will be the first in a series of FemTech public networking events which will focus on various aspects of women’s health.

Speakers include Dr Tayna Mulcahy, Director of Health Innovation Hub Ireland, Sato Aihie, an endometriosis sufferer who is currently developing a product to deal with pain associated with this condition; Siobhán Kelleher, an innovator in the Femtech area; and Dearbhail Ormond, who also has endometriosis, and is the CEO of Frendo, an app which she developed to support others.

“If you look at research for health areas that specifically affect women, or those conditions which affect women more than men, it’s clear we are still at the early stages of understanding the science behind many of these conditions,” said Dr Tanya Mulcahy, of FemTech Ireland.

Historically, research in women’s health has been low compared to all other health research - ten years ago this figure was 2% of the global healthcare research budget, this is increasing slowly and is now at about 10% - this is still not enough and there needs to be more funding for women’s health research, including endometriosis, not only in Ireland but also on a global level.

Endometriosis is an inflammatory chronic condition where tissue, similar to the lining of the womb, goes rogue and grows outside the uterus and into other parts of the body.

This can be very debilitating, causing really painful periods, intense pelvic and back pain, and can also take its toll on a woman’s mental and emotional wellbeing.

There are also other longer term complications associated with this condition such as difficulties in conceiving a baby, which when combined with the chronic pain of endometriosis, can make for a very challenging life overshadowed by this condition.

Diagnosis is difficult and typically takes seven to nine years, with women experiencing first symptoms on average at 20 years of age.

However, thanks to the resourcefulness of several women, some of whom themselves suffer from this condition, there is light at the end of the tunnel.

In November, 2022, FemTech Ireland was launched by Health Innovation Hub Ireland whose aim was to support the development of new products and services that address women’s health issues by creating a community of people with expertise and interest in this area, including researchers, clinicians, start-ups, and anyone with expertise that can support product development, and some of these women will be speaking at this event.

Dearbhail Ormond, originally from Dublin, suffers from endometriosis, and she developed an app, ‘Frendo’, in 2019 having experienced nearly 20 years of misdiagnosis.

“ I was driven to make a change for others so they would not experience the dismissal and isolation that I did,” she said.

‘Frendo’ is available on IOS and Android and provides information on how to check for the signs of endometriosis and adenomyosis, which is a gynaecological condition causing endometrial tissue in the lining of the uterus to grow into the muscular wall of the uterus.

The app provides many other tips such as tracking symptoms in order to gain a better understanding of how to communicate with partners, family, employers and the doctor, and aims to manage this chronic illness on an ongoing basis in order for people to live a better quality of life.

“ I essentially built what I wished I had all those years ago when I felt so isolated on my own journey,” explained Dearbhail.

Often women are dissatisfied when they cannot get a defined diagnosis from their doctors and Dearbhail confirms that is often the case.

The response we often get is dismissal, and a sense that the severity of the illness is all in our heads, and a feeling that we, as women, should accept and tolerate pain when it comes to periods.

“I suffer from endometriosis pain 70% of the month, and statistically women with ‘endo’ are affected one third of every month, therefore seriously affecting their lives and work.”

Conception can also often be a challenge to women who suffer from endometriosis.

“In my own case for example, I was told by doctors that I would not conceive naturally. I have stage 4 complicated endometriosis which has caused nerve damage for which I have had three surgeries, however I was lucky to conceive my miracle little girl.

“Previously, I had framed my life around not having children, and it’s true that 60% of women who have endometriosis will suffer infertility, but many of us will also go on to have healthy children, and that is a very hopeful message.

We should be providing education about this condition and informing girls about fertility and their bodies at a much earlier point.

“For example, we can check our AMH levels in our early twenties (AMH levels correspond to the number of eggs you have.) I never knew about this until my mid- 30s!

“This won’t show you the whole picture but will empower you more. This is what we at ‘Frendo’ are all about, empowering people as much as possible to make the best decisions and be the CEO of their own bodies.

“My hopes, and Frendo’s mission, is for a National Endometriosis Screening at school level in every country, along with major information campaigns,” Dearbhail added.

Another speaker is Siobhán Kelleher, who is passionate about health and wellbeing and the ability of food, medicine and technological innovation to save and improve the lives of patients.

She has completed BioInnovate, a needs-led innovation programme aligned with Stanford Biodesign, and is currently leading projects to develop a novel digital biomarker to diagnose, monitor and treat chronic inflammatory endocrine conditions such as endometriosis.

Sato Ahie is a Cork-based engineer who was driven to find a solution to manage her endometriosis pain because she was unable to find anything on the market which worked for herself and her sister. She is using her engineering background to develop her own pain management device, and she will also be sharing her experiences.

One of the executive producers of the documentary Below The Belt is Rosario Dawson, who will be in the lead role of the upcoming Star Wars series Ahsoka.

She said: “ We deserve to be believed. We deserve to be understood. We deserve to be empowered to understand ourselves, our bodies and any medical treatments presented to us. We deserve better across the entire healthcare system. Below The Belt aims to revolutionise the status quo so that people with endometriosis get what we deserve- the right to live healthy, informed, fulfilling lives.”

Sign up for the event at https://www.eventbrite.ie/e/hihi-femtech-event-below-the-belt-tickets-629831010507

The event runs from 6.15pm to 9pm on Thursday, June 22 at UCC.