Endometriosis support group wants to help more women

Thursday 24 March 2022

Awareness of endometriosis is “still not where it needs to be”, according to an islander with the condition.

Four years ago, Kenieta Domaille set up an online support group - called 'Endometriosis and Me' - for sufferers of the condition, where endometrial-like tissue grows outside the uterus.

“I set up the private forum as I became acutely aware that there were no support groups such as this in Guernsey and, with one in 10 women suffering from the condition, there needed to be somewhere for women to come together,” said Ms Domaille. 

“I wanted to create a safe space where women could speak openly and honestly and not feel alone, or judged, in their journey anymore.

“We have close to 150 members and the group continues to grow but, whilst this is great, it is such a tiny percentage of the population and we are very aware that we could be helping so many more islanders.”

Pictured: Kenieta Domaille started experiencing symptoms of endometriosis at 14. 

Ms Domaille said some members of the group are in Jersey, showing that there is scope to raise awareness further across the Channel Islands.

“The first two members to join the group soon recognised the need for extra support and joined me at the helm,” said Ms Domaille.

“The three of us now share responsibility for running, managing and growing the group, while campaigning to raise more awareness.

“We have gained the support of a local GP, States’ Deputy and a dietician and we have a lot of plans in the pipeline.”

Pictured: Endometriosis is estimated to affect around one in 10 women. 

Endometriosis is often undiagnosed or misdiagnosed. Registered Nutritionist Sarah Gale told Express recently that it takes an average of seven years for the condition to be correctly diagnosed.

Ms Domaille’s diagnosis took longer than this.

“I first developed symptoms very young, at around age 14. I remember vividly crawling up the Pollet, in excruciating pain one Saturday morning, on my way to my then Saturday job.

“I booked in to see my GP who suggested the contraceptive pill as a form of treatment for the pain. No further investigations took place. Over the course of the next 10 or so years, I experienced further pain and symptoms, including extreme bloating and discomfort and chronic fatigue.

“All my symptoms made life very difficult to contend with at times. I kept returning to my GP over the years and was initially diagnosed irritable bowel syndrome and was later referred to a specialist, but still no-one could tell me what was causing the problem.

“At times, I was made to feel like I was imagining it and I was told on many occasions that I presented as clinically healthy with no evidence at all of any issues that would be causing the problems.”

Pictured: Chronic fatigue syndrome is a separate condition to endometriosis. 

Ms Domaille was eventually diagnosed with chronic fatigue syndrome, which is a symptom of endometriosis, but a separate condition.

Ms Domaille continued: “It wasn't until I was in my mid 20's that I was offered an laparoscopy, which is currently the only known way to diagnose endometriosis.

“Had I known what an laparoscopy was, or indeed, what endometriosis was back then, I would have been better placed to ask the question and request this option many years earlier. However, I had no awareness of anything in this respect at all.

“Further to my diagnosis, I underwent ablation surgery, which temporarily treats endometriosis, but sadly, after the birth of my sons, and as expected, the endometriosis grew back and this time with a vengeance. This resulted in the need for further, much more extensive surgery."

Pictured: A yellow ribbon is the symbol of endometriosis awareness month. 

March is endometriosis awareness month.

“Awareness is increasing all the time, which is fabulous, but it is still not where it needs to be. There are still far too many people who have never even heard of endometriosis.

“The problem with this condition is that symptoms can become so constant for some that the pain, brain fog, fatigue and many other associated symptoms can become 'normal'.

“Young girls and women begin to lose the ability to sufficiently articulate their symptoms to medical professionals because they almost forget what it is like to not feel that way. This, in turn, adds to the issue of delayed diagnosis.”

Pictured: Ms Domaille believes young girls and women should be taught more about menstrual health. 

Ms Domaille said the support group is not only for suffers of endometriosis, but all menstrual health issues.

“It is essential that young girls and women are taught what is and isn't normal in regard to menstrual health and any gynaecological problem very early on.

“Menstrual health should not be debilitating to anyone in any way. If it is, it needs to be addressed, sufficiently investigated, and diagnosed as a priority.

“Teaching this in schools is essential, not just to arm young girls with the knowledge and terminology needed to achieve a correct and timely diagnosis but also to avoid unnecessary interruption to their schooling and grades.

“Many of our members experienced huge impacts and interruptions to their school lives and subsequently their working lives prior to diagnosis and this is what we are currently working hard to address.”

Pictured: The Endometriosis & Me (Guernsey) Facebook support group. 

Ms Domaille encouraged anyone struggling with endometriosis, or any menstrual or gynaecological issue, to join the group. 

“Our forum is completely inclusive. It was born out of my own journey with endometriosis, hence its name, but it is open to anyone experiencing difficulties with any element of their menstrual health, diagnosed or not.

“We aren't medical professionals and we don't claim to be. We are just normal, everyday women who are passionate about offering support to others further to our own experiences.

“Members are welcome to contribute as much or as little as they wish to the group. The important thing is for every member to feel comfortable.”

Pictured: There are many symptoms of endometriosis. 

Ms Domaille said that the group operates with “complete discretion”.

“We are very conscious that, for some, it is an incredibly personal subject. When a new members joins, they do so discreetly, there is no welcome message and attention is not drawn to them in any way.

“The group has given so much hope and support to so many people. We are incredibly proud of how far the forum and indeed awareness generally has come but it's still not enough.

“We are passionate and determined to continue our work and we remain hopeful, optimistic and increasingly excited as to what the future holds.”

The support group can be found by clicking HERE.

Pictured (top, centre): Kenieta Domaille.

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Many women may be unaware they are suffering from endometriosis