It takes almost a decade to get diagnosed with endometriosis in Northern Ireland

It has been revealed that waiting times to be diagnosed for endometriosis have increased since before the pandemic.

A new report by Endometriosis UK was launched to mark Endometriosis Awareness Month at the beginning of March 2024.

It also claims women have been 'dismissed, ignored, and belittled’ for years.

The main findings from the report, which is based on a survey of 4,371 people who have received a diagnosis of endometriosis shows:

“A rise in diagnosis times in all four nations since 2020, to 8 years and 10 months in both England and Scotland, to 9 years and 5 months in Northern Ireland, and 9 years 11 months in Wales.

Almost half of all respondents (47%) had visited their GP 10 or more times with symptoms prior to receiving a diagnosis, and 70% had visited 5 times or more.

Only 10% of respondents reported that GPs mentioned they suspected endometriosis at either their first or second appointment where symptoms were discussed.

52% had visited A&E at least once, and fewer than a fifth of those (17%) were referred to gynaecology at their first visit. 26% of respondents visited A&E 3 or more times with symptoms prior to diagnosis.

20% reported seeing a gynaecologist 10 or more times before being diagnosed.”

25-year-old Lisa Herbison from Ballymena has been living with the chronic illness since she was 16 years old. She got diagnosed finally in November 2022, 8 years since first experiencing the pain.

She spoke to CoolFM/Downtown exclusively: “I can’t even count on my two hands how many times I went to the GP and said, ‘I’m in pain, there is something wrong with me.’ I had to actually say ‘it’s endometriosis', and still there was little done about it. I had to go private… it became embarrassing to keep going to the GP. I just felt unheard and not listened to. When I went private it was amazing, I started crying because it was so great to be listened to and heard.”

She went on to say: “I had to take two years off from studying nursing. That killed me, as I only have six months left to go. I mean, money is tight, I am a singer as well, so I’m trying to get gigs. Even doing the gigs is hard because I am in pain 90% of the time now. It’s not just periods, it’s not just ovulation, it is all the time. The flare ups can catch you anywhere.”

Lisa experienced years of being dismissed and being told her pain was just ‘bad periods’. She is trying to raise awareness of the illness. She has taken to social media telling her story. She has also given talks about her condition to her fellow nursing classmates, as she believes the health service needs to be more educated in the matter.

As a student nurse, Lisa said she fully understands the pressure GP’s are under, and she says education in the matter is getting better. However, there are no Endometriosis centres in Northern Ireland. She thinks this needs to change.

In a statement from the Department of Health about this issue, the department said it's developing a women’s health action plan:

“Covid, and general pressures within the gynaecology service in Northern Ireland have delayed the development of endometriosis services. The Department of Health last year commissioned the ‘Getting It Right First Time’ (GIRFT) team to undertake an independent, external rapid review of gynaecology services in Northern Ireland. This was a recognition of the unacceptably high waiting times for both gynaecology outpatient appointments and surgery, including for those suffering with endometriosis.

The GIRFT report identifies 20 regional recommendations, designed to improve patient care and tackle waiting times. In addition, there are bespoke recommendations for each of the Health and Social Care Trusts. It is recognised that some of the recommendations will require additional investment, and this will impact delivery.

The Department is developing a short-to-medium term women’s health action plan that builds on ongoing work, including the implementation of the GIRFT report, and identifies the priority actions across women’s health services that can be taken forward within the current budget, as well as those actions for which additional investment will be required.”

You can hear more about this story in our hourly bulletins: https://planetradio.co.uk/cool-fm/

You can access Endometriosis UK’s full report here: https://www.endometriosis-uk.org/diagnosis-report