Endometriosis investment a 'monumental step forward'

Erin Ferguson, a young woman from Coleraine who has endured the debilitating condition endometriosis since the age of 11 described as a “monumental step forward” the £1.95 million investment in the North’s Endometriosis Services.

Endometriosis is a chronic condition suffered by women where tissue similar to the lining of the womb grows outside the womb, most commonly on the pelvic lining, ovaries, fallopian tubes, or outer surface of other pelvic organs.

On November 2, Stormont Health Minister Robbie Butler (UUP) announced £700,000 for the North’s Endometriosis Centres in the Belfast and Western Trusts, and a £1.25 million allocation across the five Health and Social Care Trusts to "strengthen local services and support implementation of a new Regional Endometriosis Pathway.

The investment is “aimed at improving access to care, reducing waiting times and ensuring women receive the right treatment at the right time”.

Speaking to the County Derry Post, Erin revealed although she first experienced the symptoms of endometriosis at 11, she was not diagnosed until she was 21.

“It took me 10 years to get an endometriosis diagnosis. Growing up, I felt there was a huge stigma around talking about periods and about women’s health conditions,” she added.

“I missed lots of education and my entire teenage years due to the condition. “I went to the doctor so many times growing up but I was continually dismissed or given treatments, which did not work, to mask my condition instead of actually figuring out the root cause.

“I think they put me on six different types of birth control, and there was a point where they put me on a six-month course of antibiotics.

“It ruined my overall teenage years. I just felt so alone and let down while experiencing the effects of endometriosis. In post-primary school, originally, there were no conversations or information about endometriosis, and we didn’t have access to free period products until I was in Sixth Form,” said Erin.

“It was then my principal and I actually worked together to introduce the Period Dignity Scheme, where free period products were distributed across the school,” added Erin.

“We also started talking openly about periods to the rest of the pupils to remove the stigma.”

Describing how living with endometriosis impacted her, Erin said her periods were “severely heavy” to the point she would bleed all the time.

“I would bleed through my school skirt, and trying to do anything was difficult. I was very fatigued and even leaving my bed was difficult,” she recalled, “and not just during my period.

“If I got a bad endometriosis flare-up, for two to three months of my month I would be bed-bound. The condition and the pain was so severe, and to try and navigate a [health] system which did not really understand was completely awful,” said Erin.

Every time Erin went to a doctor she said she was “constantly dismissed”.

“I knew in myself I was not going crazy. I knew there was something affecting me for years, yet no-one understood what was happening and no-one was actually listening to me,” she added.

“I kept being told there was a three and a half year wait to see a Gynecology Consultant.

“Eventually I got an appointment and my mum went in to the consultant and said, ‘This can’t go on’. If I hadn’t had her support, I don’t know what I would have done.

“So, two years ago, when I was 21, they agreed to give me laparoscopic surgery, which confirmed I had endometriosis the whole time. There was something medically wrong with my body, yet these doctors kept dismissing it.

“The treatment has definitely helped my symptoms, I wouldn’t say resolved but I definitely would be bed-bound a lot less than I was beforehand. My periods are definitely a lot lighter. I feel I can now manage my condition better day-to-day,” said Erin.

Having recently graduated in Law from the University of Brighton, Erin said she felt gaslit all the time she was waiting on her diagnosis and treatment.

“The mental aspect of not being listened to took a toll. I was continuously being gaslit. They were trying to convince me there was nothing wrong with my body, whereas I knew I was suffering every month,” she asserted.

“When I went off to university I created the Red Line advocacy project because based on my experience with endometriosis, I knew there was a major lack in education surrounding the condition. The only information I got was online. I was never told about it in school when we were talking about puberty. Endometriosis was never explained to me.

“I knew access was needed to period products, so I have donated more than 2000 period products as part of than 2000 period products as part of Red Line because I don’t want anyone else experiencing what I went through at school.”

Erin’s work around endometriosis has also benefited from her participation in Diamond Ireland Pageants.

“I am currently a finalist for Miss Diamond Ireland, which takes place in May. Pageants are a major part of my life and they give me a great platform to be able to share my advocacy with so many people, online and in person,” said Erin.

“Through pageantry I have been contacted by so many people who can relate to me. I feel a sense of community. I have also been able to create my own book, which is a big sister guide on endometriosis,” she added.

“I wanted to create a guide that was relatable, but also get into the emotional depth of how I felt throughout this journey. I wanted something true, and it is a free guide, accessible online.

“So if someone is going through the same journey as me and struggling for answers and feeling like they're being dismissed, they can go online and read my book.

The Red Line: A Big Sister Guide to Female Health can be accessed via:

The Red Line: A Big Sister Guide to Female Health can be accessed via The Red Line: A Big Sister Guide to Female Health can be accessed via: https://www.canva.com/design/DAHEzqAVylg/5MVZR7DTtmeQtWsJ5QxayQ/watch?utm_content=DAHEzqAVylg&utm_campaign=designshare&utm_medium=link2&utm_source=uniquelinks&utlId=h5b183d7ec0