WOMEN WHO SUFFER from endometriosis say they are being forced to seek treatment abroad, in countries like Romania, due to long waiting lists for treatment and a lack of expertise on the condition which affects over 155,000 people in Ireland.
Endometriosis is a chronic disease which develops when cells begin to grow outside the uterus, leading to swelling and severe pain for those who suffer with it. In Ireland, one in 10 women are living with the disease.
There is currently an average wait of nine years before patients are diagnosed with endometriosis, and many women report being repeatedly misdiagnosed with bowel and rectal conditions by GPs and gynecologists before getting the correct diagnosis.
As a result of the delays in diagnosis and consequent delays in treatment, women are travelling as far abroad as Romania for treatment to relieve the debilitating pain associated with the disease.
Dr Gabriel Mitroi, a gynecological surgeon at one of four endometriosis specialist centres in Romania, told TheJournal.ie that he recalls treating at least five Irish women for the condition in the past four months.
“I don’t know exactly how endometriosis is treated in Ireland because I work in Romania but what I do know is that in Ireland the situation is much worse,” he said.
“In our centre we operate on a lot of European patients. We are a private centre and we have a one-month waiting list,” he said.
Waiting lists
Women who are referred to a gynaecologist through the HSE face a wait of up to two years, while those referred to Ireland’s only endometriosis specialist unit at Tallaght University Hospital face a three-year-long waiting list.
“There have been five women from Ireland in our clinic since July,” Mitroi said. “I think this will be more in the future because women didn’t know until now that there are other options available after waiting in pain all these years.
“I think you need to see more centres [in Ireland] that deal specifically with endometriosis and cancers. In our centre we deal with 90% endometriosis and then also gynecological cancers.
A very important thing to remember is that endometriosis is the most aggressive benign disease. It looks like cancer and the surgery is often worse than those treating cancer but it is benign.
Treatment for the disease involves a laparoscopy – keyhole surgery – to remove the cells from the uterus and from other organs such as the bowels where the endometriosis cells can spread to.
Here in Ireland, women have said that they’ve experienced that this surgery often does not remove all of the cells and as they grow back at a rapid pace, they are forced to undergo repeat excision surgeries to remove them. This brings huge risks to their health in other areas including fertility, mental health and physical wellbeing.
‘I didn’t matter’
One woman, who travelled to Romania last month after borrowing €8,000 to fund her treatment, told TheJournal.ie that she had three surgeries in Ireland before she was “left with no other option” but to travel abroad to a specialist centre.
“I had to go to Romania because the last laparoscopy I had in July 2018 left me worse than ever and I wasn’t given a follow-up appointment to that for eight months after it,” 27-year-old Aimee Brown from Tipperary said.
“At that appointment in Dublin they then told me, and I remember as clear as day, they said to me ‘there is nothing more we can do for you’ and that I had to just wait for the pain management unit to send out an outpatient appointment.
“I just felt like I don’t matter and what I’m going through doesn’t matter.”
Aimee started experiencing symptoms when she was 11 years old. She was diagnosed 10 years later when she was 21 years old and began treatment involving surgeries, hormonal treatment and medication, which reached over 20 tablets a day.
After losing her job at a digital marketing company she began suffering with her mental health and said she was resigned to her house, spending “six out of seven days in bed”.
“I was diagnosed with depression. I only started taking antidepressants this year and it has made a lot of difference. It’s only one tablet out of the 23 tablets I have to take a day to manage the endometriosis.
I had a massive suicidal crisis and rang the Beacon and they had me in for counselling that day. I can’t drive. I can’t do anything. I can’t go anywhere. Literally my whole life is wrapped up in endometriosis.
Surgery for endometriosis requires the input of a gynecologist along with other medical professionals including colorectal surgeons in case the cells have spread.
“Here the gynecologist is only operating on the gynecology side of things but you need a colorectal surgeon if you need treatment on the bowel. I was diagnosed with it on my diaphragm which is very unusual and when I said who looks after that I was told I would need a general surgeon, so in Romania they treated that for me,” Aimee said.
‘Hopeful’
Since having her treatment in Romania almost four weeks ago, the 27-year-old said the pain has been significantly reduced and she is hoping any future pain will be manageable as a result.
She said the financial pressure as well as organising treatment in a foreign country only added further stress to an already stressful situation and that she would have preferred to have had better treatment in Ireland.
“Since having the surgery with that surgeon, I am hopeful. For the first time in 16 years I actually have a bit of hope.
“Before now, I spent six out of seven days in bed. I had chronic fatigue, pain, fainting and collapsing.
“The post-operation pain is nothing compared to the pain I was in all the time. I was told it would take 12 weeks to calm down and it’s only been about three. I was literally at my wits’ end, I couldn’t wait any longer.”
Aimee travelled at her own expense, at a cost of over €8,000. Less than half of this cost can be recuperated under the HSE’s Cross Border Directive.
When TheJournal.ie contacted the HSE to ask how many applications of this nature were submitted and how many were approved, a spokesperson said that information was not available.
‘Education’
Endometriosis nurse specialist, Rachel Cormack, who works at Tallaght University Hospital said greater education was needed among medical professionals to speed up diagnosis and advance the treatment of the condition.
“I did some training with GPs last year and I’m trying to continue doing it,” she said.
“I’m trying to push education for other health professionals in my role as an endometriosis nurse… women’s health has always been down there. It’s underfunded [and] under-researched.”
She outlined the information she shares with women who are seeking medical help:
“GPs are under so much pressure, they have this tiny allotment of time to see patients. Sometimes I talk to them about initiating certain types of pain relief around the time of [period] pain and they say to me ‘Oh God, yeah, I should have thought of that’.
“Often for women, you sit before a doctor and you go blank, so I tell women to have it all written down, have a pain diary, a menstrual diary. Talk about bowel symptoms. And then we don’t talk about the sexual symptoms enough.
“So I say, have it all written down and hopefully it will wake these gynecologists up to take it on board and listen.”
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