In honour of Endometriosis Awareness month, Kelly Smyth reached out to the public to see how aware they really are of endometriosis, and what makes her fellow endometriosis sufferers tick. From years of medical gaslighting to being told to get IVF to ‘cure’ an incurable disease, these women share their experiences to bring light to what it’s really like to have this life-altering illness.
Usually, when I tell someone I have endometriosis, the first question they ask is: “What’s that?” So, dear readers, I will tell you the very same thing I tell everyone else.
Endometriosis is a disease in which the endometrial-like tissue, usually found within your womb, grows outside of where it’s supposed to, and often leaves a path of destruction in its wake. In Ireland, an estimated 155,000 women are affected by endometriosis.
I’ve had my period since I was 10 years old, and it’s never been easy. When I found myself folded over on the stairs in pain, unable to eat, and feeling deeply depressed each time it came, I was told it was “normal.” At 14, I had four urinary tract infections within six months, 8-day-long periods, and a horrible stabbing pain in my lower pelvis. GPs told me I had ‘anxiety.’
When I began vomiting in the school bathrooms in sixth year, I started to doubt how normal it all really was. By then, my periods lasted 10 days. Then came college—where I spent most of my time on my period, eventually reaching the 20-plus day mark. This was cruelly accompanied by violent vomiting and shooting pains that extended down to my ankles.
Following a particularly bad instance of blood running down my legs and being left bedridden for four days, I finally got a referral to a specialist. Following an MRI, they found what I had always known. Endometriosis.
It had taken over a decade.
Based on my own experiences, it became clear that something was deeply wrong. To understand this better, I conducted a survey, hoping to amplify the voices of both sufferers and non-sufferers and shed light on a disease that still feels invisible.
Is Awareness Enough?
In a survey conducted by The University Observer, 96.8% of the 125 respondents indicated they had heard of endometriosis. On the surface, this would seem like a positive result, but when asked whether they could actually explain what endometriosis is, only 55.2% said yes. Another 29.6% thought they could maybe explain it, and 15.2% outright said no.
Despite the fact that 1 in 10 women suffer with the disease, almost 1 in 2 respondents admitted they would struggle to explain it. This gap between name recognition and understanding is telling, and leaves a sobering conclusion: while awareness efforts may have reached people’s ears, they haven’t resulted in understanding.
It’s not enough to know the name. People need to know the symptoms. Otherwise, people who may suspect they have endometriosis can still be dismissed, overlooked, or forced to suffer in silence without a clear path to care.
In a comment provided to The University Observer, Endometriosis Ireland, a non-profit advocacy group, emphasised the particular importance of awareness for students:
“Endometriosis awareness is crucial, especially for students, because early diagnosis is key to preventing long-term damage. The earlier we can identify and treat endometriosis, the less chance there is for irreversible harm to organs, infertility, and the need for long-term pain management.”
Are Doctors Part of the Problem?
Many of the respondents to the survey who had been diagnosed with endometriosis shared deeply concerning experiences with medical professionals.
A noticeable trend emerged: women left waiting almost a decade or more without answers or treatment.
One respondent wrote:
“I wasn't taken seriously for over 10 years about the level of pain I was in and how distressing my period was. I found GPs very unhelpful overall. The only reason I have a diagnosis now is because I eventually went private and was taken seriously.”
Another woman detailed a particularly dismissive and outdated comment from her gynaecologist:
“I was told to continue on the pill and that my symptoms would improve once I got pregnant. I was 20 at that time.”
Unfortunately, these aren’t isolated stories. There was a consistent sense that those suffering with endometriosis were being brushed aside and often offered nothing more than a prescription for the contraceptive pill, without investigation or follow-up.
I can relate. Many women had no choice but to turn to pricey private healthcare for help. One respondent put it plainly:
“It took seven years to get a full diagnosis, despite being fortunate enough to go private. It was very disheartening. I was fobbed off with prescriptions for the contraceptive pill for many years. I often missed school and college due to pain in the interim.”
For those unable to afford private care in Ireland, some have even joined waiting lists in the UK or travelled to Romania to access timely and appropriate surgical intervention.
A partner of someone with endometriosis put it this way:
“Like most women’s issues in Ireland, it’s severely underfunded and disregarded.”
Another respondent added:
“I believe that if men were in this much chronic pain, resources would be better provided.”
The Mental Cost of Endometriosis
While the physical pain of endometriosis can be unbearable, the psychological toll is equally damaging—and often overlooked.
Several survey respondents spoke candidly about the long-term mental health impacts of living with the disease, and struggling to find care in the Irish healthcare system. The heartbreak was especially evident in the story of one woman, still partially undiagnosed, who described how endometriosis had affected every part of her life:
“Endometriosis has ruined the last 15 years of my life—physically, emotionally, psychologically, financially—and it's also impacted my ability to parent my child. I'm a single parent, which makes it harder.”
Another sufferer offered this perspective:
“Endometriosis affects my relationship with my body, my romantic relationship, and my mental health. I am still learning how to cope.”
These aren’t just medical cases. They are lives being fundamentally disrupted.
The Invisible Illness
Endometriosis is not rare. It’s not new. And it’s not just a "bad period." It’s a chronic, painful, life-altering condition—yet too often, those suffering are left in the dark.
If awareness only goes as far as name recognition, then it is not enough. Additionally, reform is urgently needed within the Irish healthcare system to provide adequate care to people with endometriosis who continue to suffer, and to rapidly improve the length of time it currently takes to receive a diagnosis.