‘It took 14 years and four surgeries to diagnose my condition, this needs to change’

A woman from Northern Ireland is calling for commitment to employ a specialist for endometriosis after having to travel to London for a diagnosis.

Laura Moore, 35, from Newtownabbey, has gone through a harrowing ordeal over 14 years and multiple surgeries.

Endometriosis is a condition where tissue similar to the uterus grows outside it, causing debilitating pain.

This month is endometriosis awareness month, and Laura spoke to Belfast Live about the lengthy process of getting her diagnosis and how this condition impacts her life.

She said: “It goes right back to when I first started getting my period, though I didn’t realise it at the time.

“When I was 17 I had emergency surgery for a ruptured ovarian cyst. From then on I was in the gynae system, and from there the pain got a lot worse as well.

“It actually took 14 years and 4 surgeries to diagnose my endometriosis. I had 3 laparoscopies at home in Northern Ireland and those consultants said I did not have endometriosis, and then said that I did but they were very small lesions.”

Laura highlighted the fact that, in Northern Ireland, there is currently no medical professional who specialises in endometriosis. This in turn affects waiting times and diagnoses.

She said: “I was diagnosed in 2021, the diagnosis wait itself in general is ridiculous. It is between 8-10 years. The issue we have is not just with waiting times, it is with the fact that we do not have a specialist for endometriosis.”

“I had to travel to London to get my diagnosis. I got that in June 2021, had an emergency surgery in October 2021 for an ovarian cyst and then in March 2022 I needed another emergency surgery.

“There are a lot of other people like me, I’m not the only one. I’m awaiting surgery again, there is a chance I might need a bowel resection as well this time.”

For Laura and other sufferers of endometriosis, the level of care provided in Northern Ireland is just not good enough.

Laura said: “I think there is not enough training, gynaecologists cover a wide range of things. Any gynaecologist will cover anything from endometriosis fibroids to delivering babies.

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“We don’t have anyone who focuses just on endometriosis. I think the services just aren’t adequate. The Trust will say it is down to funding, which I do think is part of it. But if you look at how many women need multiple surgeries and care due to later diagnosis, the money going into a specialist they would save in people only needing one surgery if it’s caught early.

“Many people think endometriosis is just a women’s health issue or a menstrual issue when it is a whole body disease. It can be found on your diaphragm and your lungs, it is bordering on my bowels, it can impact your kidneys.

“It impacts every aspect of my life. I had to cut my working hours after my last surgery, that then has a financial effect, especially as I have to travel to London for treatment.

“It impacts my energy levels and what I’m able to do in a day, it affects my friendships, relationships, everything. You learn to live in a certain degree of pain and mask it, which isn’t right either.”

Laura remarked on how awareness is growing around endometriosis and that this is an important development for those who have the condition or are seeking a diagnosis.

She said: “I think it is hugely important that awareness is growing. There are a lot of pages with fact-based, science led information out there that can help people recognise symptoms and recognise what is going on. The people can then go to appointments armed with more information and can hopefully get a better or quicker diagnosis.

“One thing that people may not be aware of is that the stages of endometriosis do not directly correlate with the pain levels someone is experiencing.

“In articles it’s mainly stage four endometriosis that gets discussed, which means that those with stage one or two might feel like their pain is inadequate or they aren’t deserving of follow up treatment if they feel they need it.

“I would be classed as stage four deep infiltrating endometriosis. Other people may have stage one or two endometriosis which is on the surface, but it doesn’t mean it’s any less of an issue.

“The staging system is really out of date, I think it focused on fertility rather than the severity of people’s symptoms.”

Laura raises awareness of endometriosis on her Instagram page, which can be found here.

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