Living with endometriosis: Irish women struggle to access support and treatment

In Ireland, it can typically take nine years to get diagnosed, with a further wait time of up to three years for surgery, advocate says

Doireann Barrett from Tralee, Co Kerry: 'There is no definitive information about the lack of services and word of mouth isn’t enough.' Picture: Domnick Walsh

When Doireann Barrett was diagnosed with endometriosis at 25, she thought her problems were over, but 18 years later she is still grappling with surgeries and pain.

She is among an estimated one in 10 women suffering with this globally, some 176m. A leading advocate said it can typically take nine years in Ireland to get diagnosed.

Treatment can require surgery, but access to this has been limited in Ireland, with one large centre having wait times of up to 33 months for some surgeries. 

A funding boost of €2.5m is being cautiously welcomed as a first step towards helping thousands of women.

Endometriosis is a benign growth occurring when the lining of the womb grows into other areas, including ovaries or stomach lining. It causes extreme and debilitating pain and can lead to infertility or difficulties in conceiving. There is no cure.

During an awareness event recently, women spoke of years of pain, with one saying she had 17 surgeries while others simply broke down.

Ms Barrett also attended this event. 

“I went to Dublin to see the  Below the Belt movie, I was listening to the women in the audience, there is so much trauma and that is my life too,” she said.

People have been shocked at what I’ve gone through over the years and sometimes do not fully believe me.”

The Kerrywoman, now 43, described suffering very bad menstrual cycles since she was 12, taking days off school. As an adult, her work-life and business have been heavily impacted.

“I have had years of surgeries and treatments and my most recent surgery, which was major surgery, was three months ago,” she said.

“I am currently in recovery from this so this recovery will take a number of months due to the severity, I am physically and mentally recovering.” 

Her son was born when she was 23, but she tragically suffered a miscarriage at 28 which she believes is linked to endometriosis.

“It was heartbreaking, as I wanted more children,” she said.

“It’s shocking, and I know I’m not the only one. There is no definitive information about the lack of services and word of mouth isn’t enough.”

She spoke of healthcare workers who did not link her diagnosis, received in a private hospital, to other health problems.

'Delay in diagnosis'

Advocate and medical scientist Kathleen King said this was not unusual.

“The first thing we think about with endometriosis is the delay in diagnosis,” she said. 

The average delay is nine years, but it can be anything above that. I’ve met women waiting 20 and 25 years.”

She regularly delivers talks in schools and said education was crucial.

“There is a very, very good menstrual education programme with an interest in endometriosis being run in New Zealand," she said.

"It is called the ‘me programme’. I have spoken to its creator about adapting this and bringing this to Ireland.”

Teenagers may not realise extremely heavy bleeding is unusual. 

“We had just short of 100 girls at a talk and nearly a dozen of them came up to speak to me afterwards,” she said. “They recognised themselves in the symptoms.”

In her experience, endometriosis is far more common than people realise. 

“I’ve delivered ad-hoc talks to nurses, pharmacists, GPs and other healthcare professionals,” she said.

“In a professional setting, I know certainly GPs are finding it difficult to differentiate between somebody whose got very basic period pain, somebody who has IBS [irritable bowel syndrome] as opposed to somebody who has endometriosis.”

She added: “Given the huge waiting lists we have at the moment it is very difficult for a GP to refer somebody on, say for a check-up or scans or to gynaecology because the waiting lists are very very long.” 

Increased funding welcomed

Recent increases in funding are welcome she said.

The HSE said, responding to a parliamentary query from Fianna Fáil TD Niamh Smyth: “In 2022, NWIHP [National Women and Infants Health Programme] anticipate that circa €2.5m will be invested in the development of endometriosis services.”

This will support multi-disciplinary teams in hospital groups and new supra-regional specialist centres for complex care at Cork University Maternity Hospital and Tallaght University Hospital.

The Dublin centre is an expansion of existing services, with recruitment ongoing. Up to now, they treated one patient monthly for advanced endometriosis surgery.

“With our additional colorectal surgeon in post, this will increase four-fold, enabling one joint-speciality surgery to be completed each week,” a spokeswoman said.

They expect to increase the overall number of advanced endometriosis surgeries from 80 to 225. Extra nurses mean an additional 600 endometriosis appointments. Surgical waiting times for women at stage 4 are currently between nine and 33 months but they expect this to decrease rapidly from now on. Waiting times for non-stage 4 are three months.

In Cork, 127 women were treated specifically for endometriosis during 2020, this is expected to significantly increase when the new centre is fully operational. Appointments have already expanded through a new ambulatory gynaecology clinic and regional fertility hub.

Irish College of General Practitioners women’s health lead Dr Ciara McCarthy said they are creating a new reference guide for GPs.

“The symptoms of endometriosis are varied, and sometimes there can be a significant overlap with other medical conditions which can create diagnostic challenges I would say,” she said.

Referring to the funding, she said: "We would hope that patients will be able to access improved care and improved efficiency of diagnosis, and access to support services.”