Well over a hundred thousand women in Ireland are living with a condition that causes excruciating pain, fatigue, bowel and urinary problems, chest pains and even infertility. There is no cure, and yet it’s still barely discussed, little understood, and funding to combat it is practically non-existent.
The condition is endometriosis, and on Saturday 28th March the Endometriosis Association of Ireland is organising an Endo March in Saint Anne’s Park, Raheny – part of a worldwide day of events designed to raise awareness, and the culmination of the global Endometriosis Awareness Month.
The association’s chairperson is Kathleen King, who was undiagnosed for nine years even though she began presenting with painful symptoms from the age of 12. “I had to leave the country to get a diagnosis and subsequent treatment,” she says, “and I live with chronic pain as a result of the delay in diagnosis and repeated surgeries.”
Kathleen’s story is by no means unusual. Although the official figure for the number of Irish women living with endometriosis is 155,000 – based on the 2016 census – she believes the total is much higher.
What is endometriosis?
Endometriosis is the presence of endometrial-like tissue located outside of the uterus. It was once thought to be the same as the endometrium shed each month as a period, however we now know that there are differences in these tissues.
This abnormal tissue contains endometrial glands and stroma which secrete substances that irritate the surrounding tissues, causing them to bleed. The immune system responds to the release of these substances by releasing inflammatory proteins causing swelling and inflammation.
The disease itself and the body’s own inflammatory response to the endometriosis can cause severe pelvic pain. Scar tissue can form over time, and this can stick the pelvic organs together and distort the normal pelvic anatomy. (Source: Endometriosis Association of Ireland)
“Often, women attend multiple GPs and sometimes multiple gynaecologists to get their symptoms taken seriously,” she says. “In Ireland, we're seeing an average delay of nine years, and in a recent study that I've done I've seen women who have waited up to 20 years to receive a diagnosis.
“This involves multiple healthcare professionals not recognising the symptoms or perhaps dismissing them as being psychosomatic. That's reflected all over the world, not just in Ireland.”
Kathleen says that the generally accepted statistic is that one in 10 women worldwide has the condition. That would put the number for Ireland at around 240,000 – more than 150% of the official figure.
EAI was set up in 1987 and its main role, Kathleen says, is education and support. It’s run by a small group of volunteers, and has never had any funding from the HSE or government. "All of our funding comes from memberships and fundraising,” Kathleen says. “Occasionally we're able to get an odd grant, but it might only be three or four thousand euro, never a huge amount of money.”
Kathleen says that very little progress has been made over the last 33 years as far as delays to diagnosis are concerned – not to mention the continued quest for a cure. In many cases, when women present to a GP with symptoms, they are not given the care they might normally expect.
“I don't think endometriosis is recognised as readily as it should be,” Kathleen says. “We find that when women go to their GPs, if their symptoms are recognised they're often told that nothing can be done for them, or that the gynaecology waiting lists are too long, or other reasons are given not to proceed with diagnosis. They may be told not to come back until they want to conceive.”
They are basically being told to put up with it? “Exactly.”
Kathleen says that societal factors are important too, and she specifically mentions “shame” as one of the reasons that women may put off or avoid seeing their doctor.
“Shame is a big thing and it's something I still see quite a lot in dealing with women,” she says. “The fear of people knowing that they have the condition, or maybe they haven't told their family that they have been diagnosed with it. It's a very complex one but it's tied to that very feminine idea that we are supposed to carry children and to physically manage whatever is thrown at us – or that we may be seen as a weaker sex if we complain about pain."
And of course, endometriosis is a condition that (with some exceptions) only affects women. “I hate to pull the gender card because I don't think it's very fair,” she says, “but I think the feeling throughout the whole community is that if this affected more men – and it does affect trans men and very rarely cis males as well – in the numbers that it affects women, then we would have had this sorted a long time ago, unfortunately.”
However, there are chinks of light for the future. There’s no question that endometriosis is being discussed much more openly than it was in the past. In recent years, celebrities like Alexa Chung, Daisy Ridley, Lena Dunham, Halsey and Amy Schumer have spoken out about their experiences with the condition.
They aren’t the first women in the public eye to do so – Whoopi Goldberg, Susan Sarandon and Dolly Parton have all spoken about it in the past – but social media has given the younger generation of celebrities a much more direct audience, and young women have responded in kind.
“I personally have seen in the last number of years that women are a lot more outspoken – younger women in particular,” says Kathleen. “I think the use of social media has been really positive, where women are able to share their experiences and talk about their condition quite openly. That has helped, and it's helped others to recognise their symptoms.”
Diagnosis is carried out with a laparoscopy, where keyhole surgery is used to send a camera into the abdomen, while the best form of treatment is excision - the surgical removal of affected tissue. However, a less effective technique called ablation is often used instead - Kathleen likens it to burning the top off weeds instead of digging them out by the roots.
Dr Aoife O’Neill at Tallaght Hospital has the main endometriosis clinic in the state (though many other gynaecologists see endometriosis patients) and she is massively oversubscribed, which Kathleen says is forcing a lot of women to travel to the UK or Europe for treatment. However, she is hopeful that things will improve – with a clear idea of how to make it happen.
Endometriosis: the symptoms
- Severe pelvic pain
- Pain with or after sex
- Pain with or after urination and bladder pain
- Pain with bowel movements
- “Endo belly” bloating
- Severe fatigue
- Subfertility / infertility
"What we would like to see is one dedicated centre within the country – a multidisciplinary centre that can deal with all aspects of endometriosis,” she says. “It's not just surgery, it needs to be followed up with pelvic physiotherapy, maybe counselling, occupational therapy – there are lots of things that need to be done.
“We've begun the conversation with the Department of Health and also some of the TDs before Christmas. Unfortunately, we've had the general election so we're going to have to restart all those discussions! But I do hope that when we get a new Minister for Health we can sit down and have that conversation with them.”
In the meantime, you can show your support by joining the Endo March in Saint Anne’s Park on Saturday 28th March at 1:30pm. It’s free to take part – you just need to register .
Find out more and support the Endometriosis Association of Ireland at their website .