We need to talk about diagnostic delays for endometriosis
"Antiquated traditions of not talking about these things has led people to not fully understand the extent of how bad the symptoms can be."
Approximately one in 10 women in Ireland suffers from endometriosis. It can sometimes take up to nine years for those suffering to get a diagnosis.
The inflammatory disease can have debilitating symptoms such as chronic pain and fatigue. The Endometriosis Association of Ireland has called for it to be listed as a disability in some cases.
Kirsten Higgins is a young, athletic, and healthy woman from Galway, so when she found herself suffering from chronic pain and fatigue three years ago, she knew something was wrong. However, she says she faced a lot of dismissal from medical professionals.
"I was awake until three in the morning, not able to sleep because I had such bad pain," she tells Her. "If I went into the doctor the next day they'd say 'oh I don’t know what that could be', but if the pain isn’t going away or it’s getting worse, it doesn’t matter what they say. You have to trust your own body."
It took Kirsten three years to get a diagnosis and it was something she had to fight very hard for. The Endometriosis Association of Ireland cites the normalisation of symptoms to be one of the reasons for diagnostic delays. Painful periods are often seen as something to be endured rather than treated, and this is particularly dangerous in cases of endometriosis.
"I think when you go into the doctor with all these symptoms they don’t exactly recognise them, or they’re just not sure that it could be that bad," Kirsten says.
"A lot of women could have this and think that it’s normal so they don’t want to go in complaining about something, when it really is something to be complaining about because it’s not normal at all."
As there is a lack of services for endometriosis patients in Ireland, Kirsten found herself being referred from consultant to consultant.
The Coombe last year launched Ireland's first endometriosis clinic, which provides specialised care with a multi-disciplinary team. Kirsten stresses the importance of this type of care being more readily available.
"I was being referred for ultrasounds, and I now know had I just been referred to a gynaecologist they could’ve done an ultrasound they would've known what they were looking for," she says.
"Being passed around from one doctor to another, to consultant to a gynaecologist, it’s great if you can get treatment but the pain doesn’t go away immediately after. It might not go away, and I do think there’s a need for a team of doctors."
There is still a big stigma around talking about mensuration and reproductive health in Ireland, and this can hold people back when they need to access care. Kirsten believes this is something that needs to end with our generation.
On top of starting a conversation, she wants to highlight how important it is to trust our own bodies even when we are dismissed.
"If I went through all of this and I just didn’t tell anyone I got surgery, the next generation would be sitting in their rooms with the same pains and no information," she says.
"There are days when it’s so hard, you’re sitting there with another consultant and you’re being told nothing is wrong.
"You have to find the strength and say 'no, I know my body, I know how I felt before and I know that what I’m feeling now is absolutely not normal.'"
March is Endometriosis Awareness Month. You can find out more on The Endometriosis Association of Ireland's website here.