“Is it for yourself?” The woman behind the pharmacy looks at me.
“It is,” I tell her.
“And what will you be using it for?”
There’s a pause as I contemplate asserting my right to privacy.
“Endometriosis,” I respond.
The woman says nothing and hands me a 24-pack of Nurofen Plus.
This is a familiar scene for many people in Ireland. “Is it for yourself?” is the question that wants to know your private pain but doesn’t want to be seen to be rude about it. A distinctly Irish question. And if you’re one of the thousands of unlucky women and people assigned female at birth who suffer with endometriosis in Ireland, this pharmacy showdown is a lifeline.
If you live with this disease in Ireland, there is no specialist excision surgeon who can help you. There is no clear pathway for treatment. Diagnosis takes, on average, 10 years – you keep showing up at a GP with symptoms that either aren’t believed or aren’t understood.
And the biggest symptom of endometriosis? Pain.
On March 6th, a press release was issued by the Department of Health announcing the “significant advancements in women’s health” for the launch of Women’s Health Week (no, I didn’t know about it either). Within the press release, there was a quote from Minister for Health Stephen Donnelly stating: “I’m delighted that women in Ireland are to be provided with a clear pathway for the management of endometriosis.”
The spin of this press release was more dizzying than a blast of codeine to the blood.
In a tweet he shared that same day, the Minister for Health stated that most cases of endometriosis would be treated at primary care level and that two supra-regional specialist centres were “in development”. This effectively means women and people with this disease are to be sent back to their GPs – doctors who are overworked and know the least about endometriosis – and that there remains no specialist excision treatment centre for us to attend (the international gold standard for treatment).
But back to codeine. If the biggest symptom of a disease that is as common as asthma or diabetes is pain then surely there must be some relief for women and people with endometriosis? Not so much. The waiting list for a pain clinic I contacted at a big Dublin hospital is 1½-2 years. It’s likely that other public pain clinics across the country have similar waiting times. But let’s assume the best – that there’s only a three-month waiting list to see a pain specialist. Minister, if your insides felt like they were being torn apart by barbed wire, could you wait three months? Could you wait two years?
I was conditioned to believe that being a woman and being in constant pain was normal. It is not
The stakes are real here. Waiting times to see some GPs can take a couple of weeks. If you’re in the kind of pain endometriosis provokes, you can’t wait a week. You can’t even wait a day, or an hour. So you go to A&E, you clog up a system in crisis with a non-emergency pain emergency. Your vitals will be fine and you’ll be sent home and told to take some paracetamol.
The ability to purchase painkillers with codeine can mean the difference between functioning and languishing for many endometriosis patients. If the Government’s proposal to make them prescription-only is pushed through, it’s women who will be predominantly affected. If there are no readily accessible pain clinics and no medical marijuana licences and no codeine painkillers available over the counter, these women will be left with nothing to help ease their pain.
Endometriosis: 'We're treated like hysterical drama queens.'
How can a minister for health get this so wrong? How can a national taskforce dedicated to listening to and meeting the needs of women’s health in Ireland fail a huge community of us so badly? Endometriosis is a common disease. Pain is the main symptom. With treatment options so poor, and waiting lists for services that might alleviate symptoms so long, why is a lifeline being taken away?
I was diagnosed with this horrible disease in March 2020, a week before the first national lockdown for Covid-19. It took until I was in my early 40s to get a diagnosis. I was conditioned to believe that being a woman and being in constant pain was normal. It is not. I spent the entire pandemic fighting to have my pain believed. This moment we are in now feels very familiar to me. It has a whiff of “sure, you’ll be grand” about it – that other distinctly Irish sentence, the one that means “I don’t want to know”.
[ Endometriosis: ‘I was told this was a normal part of being a teenager’Opens in new window ]
If the Minister and Department of Health really had, as they claim, listened to women and advocates about endometriosis, we’d be hearing another Irishism: “I’m only havin’ you on.” And we could pretend like all of this was a joke. That allowing thousands and thousands of Irish women to languish in pain while the State did nothing wasn’t real. That it was all a dream.
But it isn’t a dream. It’s a nightmare. We are being left to languish, fending for ourselves and our health, with nowhere and no one to turn to in our own country.
And some day soon someone you love will find that the pain they’ve been privately coping with is getting too much to bear. The word “endometriosis” will be heard and you’ll know that their pathway forward is anything but clear.
