HEALTH MINISTER Simon Harris was warned that women feel like ‘second class citizens’ over the way they have been treated while living with endometriosis.
Women reported feeling suicidal, having their motives questioned when they reported symptoms to a doctor, and a failure to receive adequate treatment at a huge risk to their fertility, according to correspondence sent to the Fine Gael TD over the past year.
Around 155,000 women and girls of all ages are suffering with endometriosis in Ireland.
The chronic condition affects one in 10 women, but women say a lack of awareness in the area among medical professionals, and a lack of interest at political levels, has seen women wait upwards of nine years for diagnosis and subsequent treatment.
Endometriosis involves cells beginning to grow outside of the uterus, with an immune response that causes swelling and severe abdominal pain.
Women report being repeatedly misdiagnosed with other bowel and gastrointestinal conditions by GPs, and in many cases report having their symptoms dismissed as “period pain” or “women’s problems”.
Documents obtained by TheJournal.ie under Freedom of Information legislation show more than a dozen women have pleaded with Harris for better treatment and awareness of the debilitating disease which can affect women and girls from as young as 10 or 11 years old.
One woman, who contacted Harris directly in February, said she felt like a second class citizen and said she attempted suicide as a result of the debilitating mental and physical toll the disease has taken on her.
She described the “immense pain” she experiences daily and the ineffectiveness of the painkillers she has been taking to reduce the pain.
In a previous interview with TheJournal.ie, 27-year-old Aimee Brown also spoke candidly of “the suicidal crisis” she faced while dealing with the mental and physical toll that endometriosis takes.
She described waiting for 10 years for a diagnosis, being forced to travel for treatment, and being dismissed by medical professionals in Ireland.
Inhumane
In another email to Harris, one woman gave an account of how doctors told her “that this is something girls during puberty have to deal with” when she first described the symptoms she was experiencing.
She told Harris how “she couldn’t stand with the pain” and that medication prescribed to her didn’t work.
Her GP questioned whether she was “possibly seeking attention, looking to miss school”.
Following surgeries, doctors repeatedly said they found no evidence of endometriosis.
“I remember breaking down in the hospital bed to my mam because I couldn’t understand where the pain was coming from.
“The pain I felt was very real and yet every medical professional, the ones we’re supposed to trust, was telling me there was no reason for my pain. My pain was apparently all in my head.”
Following an emergency surgery to investigate her symptoms at a later stage, a doctor asked her “things like ‘how are things at home?’” and “‘are you having trouble in your relationship?’”, questions she felt were irrelevant to her symptoms.
In October, a woman gave an account of the “horrendous pain and muscular cramping” she lives with on “a daily basis”.
“We want to pose to you the question regarding the lack of care and treatment towards women’s health care in Ireland, compared to other EU countries. It is shocking and quite frankly, inhumane,” she said.
Speaking of her friend’s experience of the disease, she said: “We, as humans, deserve to live a happy, healthy life” but the “lack of education, care interest and awareness surrounding endometriosis in Ireland has left us both [with] a potential infertile adulthood”.
Correspondence released to TheJournal.ie was heavily redacted, with all personal information, including names, address and identifying details removed in line with the Freedom of Information guidelines.
Messes with your head
Shauna Conroy, from Dublin, who spoke to TheJournal.ie about her experience seeking help and support for endometriosis, said it was frustrating being misdiagnosed while endometriosis was given little consideration by medical professionals.
“There was a nurse… and she said to the doctor do you think it might be endometriosis and she said that word, and I remember saying ‘oh, I actually have that in my family’.
“My aunties have it, my cousins have it. I knew my aunties could never have children and I said there is a family history but after that they never went that route and it was all gastro,” the 27-year-old said.
She moved from one GP to another and saw several different consultant doctors for a variety of conditions over a two-year period.
“They thought appendicitis, Crohn’s, they said there could be something on my colon when they were going down the cancer route. They throw these phrases out willy-nilly and then you’re not seeing another doctor for months so you’re left with this in your head,” she said.
I genuinely thought that I was going to need a kidney donation because they were saying now we see something on your kidneys, and psychologically that messes with your head.
“And physically you’re just wrecked from all the tests and scopes, and prodding and poking,” she added.
During this time, and despite going through a process of elimination to rule out other diseases, Shauna repeatedly told doctors she thought it might be endometriosis as other family members had it but she felt she wasn’t taken seriously.
“I was rushed to A&E with severe bleeding and was in overnight. And then they said to me, we think it’s your appendix, again. I literally said to them ‘do you not have my file?’. Chapter two of it will tell you we ruled out the appendix.
“After about 12 hours of telling them everything, they said ‘oh, it probably is endometriosis’ and said you have to wait for surgery, and they sent me home with a box of laxatives.”
“And I get that they’re not going to say there and then, ‘here’s a magic pill’ but you just feel like you’re cattle and I mean, you’re severely bleeding and you think something is damaged.
“You think what if it happens again, and you sit at home telling yourself it’s fine. That happened one of my aunties, she started hemorrhaging and they rushed her in and did an emergency hysterectomy, so that’s what you have in the background.”
Campaigners have been calling for a dedicated centre of excellence to be set up in Ireland with teams of specialist consultants put in place to improve the shortcomings in treatment of the condition.
They also want better education and training of medical professionals in this area.
Asked what the Health Minister is doing to support the 155,000 women with the condition, a spokesperson said the Women’s Task Force will consider endometriosis and how it is treated, and recommendations from that task force will be taken into account.
“It is important to state, the Minister is guided by the advice from the HSE’s National Women & Infants Health Programme. Its advice is that the best way to help the majority of patients with endometriosis is to improve access to gynaecology services,” they said.
In December, advocates and patients living with the condition appeared before TDs and senators in Leinster House to appeal for better investment and awareness in the disease.
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