New figures show there are currently 747 women on waiting lists for endometriosis surgery in Ireland and 313 of these women have been waiting for between three and 12 months.
Endometriosis is a debilitating disease where tissue, similar to the lining of the womb, grows in other parts of the body.
In some cases, it affects organs like the bladder and bowel and patients with the disease often have chronic pain.
The Endometriosis Association of Ireland said hundreds of women are travelling abroad for surgery due to a lack of specialist services in Ireland.
Minister for Health Jennifer Carroll MacNeill has said women with complex, severe endometriosis have been failed by a lack of understanding in Ireland.
Ms Carroll MacNeill told RTÉ News that endometriosis in Ireland has been under funded, under researched and not understood as a major health issue.
The HSE said that 226 women travelled abroad for gynaecology procedures under both the Cross-Border Healthcare Directive and the Northern Ireland-planned Healthcare Scheme last year.
However, the HSE said it does not record a breakdown of figures for endometriosis specifically.
'Better ways to support'
Ms Carroll MacNeill said she had also tried to obtain the figures from the HSE but was unable to do so.
She added that she was disappointed that this was the case, and that it was unacceptable.
Asked what she said to the HSE about this the Minister said: "I have said that I need to know how many have gone, I need to know how many are planning to go so that we can try to find better ways to support them.
"I need to know this, and it is not okay to just lump this into gynaecology.
"Generally, if you are at the point if you are looking to travel for surgery whether it's to London, to Greece, to Romania - people have gone to the United States - it has gotten through the body."
"There are women with whole systems, from the shoulders to the pelvis and beyond, that have been impacted in this way and it's literally parts of their organs sticking together in different ways, can you imagine the pain," Ms Carroll MacNeill said.
Watch: Minister says women with endometriosis in Ireland have been failed
She added: "The cases range from very moderate cases, which can be managed in the community, managed with GP care, that is through to really very severe cases that have an absolutely debilitating impact on the woman."
Figures obtained by RTÉ News show that more 500 women have travelled to three specialist endometriosis clinics in Romania, Spain and the UK over the last three years for treatment.
Ms Carroll MacNeill said that she is working with HSE CEO Bernard Gloster to try to find ways to help women who are travelling abroad for treatment to be supported financially.
She also said that she had been meeting women this week who have the disease.
We need your consent to load this rte-player contentWe use rte-player to manage extra content that can set cookies on your device and collect data about your activity. Please review their details and accept them to load the content.Manage Preferences
'Unacceptable'
Ms Carroll MacNeill added it was unacceptable that women have been seeking expertise in other countries because not enough is being done to support them here in Ireland.
Endometriosis Ireland said 300,000 women here have the disease and 30,000 of these are complex cases.
The organisation said women are being forced to go abroad for treatment due to lack of specialist services in Ireland.
Expert-led excision surgery is believed to be the best treatment for the management of the disease long term.
Two supra-regional specialist centres have been developed by the Government for the management of complex endometriosis; they are based in Tallaght University Hospital and Cork University Maternity Hospital.
However, figures obtained by RTÉ News show that only half of the posts at the Cork specialist centre have been filled.
Asked if she was satisfied these services had the multi-disciplinary teams needed to help women Ms Carroll MacNeill said: "I think it is a step but it is not going to be enough.
"So, for example, what we need is to make sure that the multi-disciplinary teams and in particular the surgeons that are performing excision surgery to get this endometriosis out of them, that they are trained at the top level."
Expertise
Ms Carroll MacNeill said she wants to get better training for surgeons in Ireland and is planning to bring in expertise from other countries to train doctors.
"What I want to drive is an international calibration for immediate training for surgeons as quickly as we can to bring that capacity to Ireland and invite that capacity to Ireland to upskill that training and then better collaboration for longer term fellowships for our surgeons to be able to train in these specialist centres."
Ms Carroll MacNeill said there are some surgeons that can do excision surgery here, but when it gets complex and is on several organs more expertise is required.
"What we need when it gets incredibly complex, when it is multi-system, when it is on the bladder, when it is on the bowel, we need more expertise.
"We also need better partnerships between colorectal surgeons and the other surgeons performing the excision surgery because what you don't want is a woman who is having excision surgery and there to be a long term impact on her bowel, a long term impact on her bladder.
"So, we need these competencies working together and that is the level of care we want to deliver, we have some of the steps taken to create those teams, but we have an awful lot of work to do," she said.
A new national endometriosis framework, which will set out a defined clinical care pathway, was announced by the previous government over two years ago but still has not been published.
The framework will identify how care for women will be delivered at primary care centres, local hospitals and specialist complexes.
Asked why this framework has been delayed for so long, Ms Carroll MacNeill said she is agreeing the pathways with the GP community who need to play a bigger role.
She added there were many GPs doing really well helping and supporting women.
Ms Carroll MacNeill said the framework is on her desk and that she expected to publish it within the next couple of weeks.
Endometriosis Association of Ireland chairperson Damien Donoghue said the framework must be put in place as soon as possible.
"We don't have a framework so GPs are left with no avenues to refer patients to the relevant services, which are scarce, so in the absence of a framework there is not a roadmap for clinicians to try to manage the care, which is quite complex and it's not just a gynaecological consideration, it's multi-organ."
