Ms Ilanna Darcy:

I might step in here. As I mentioned, ours is a small charity run purely by volunteers. We use our spare time to look at the issues presented. It is definitely a viable option and we would certainly be interested in better understanding how we could set up something like that and be involved in it, especially now that we are finally in a position to take on a part-time paid member of staff, but it is not something we have had a chance to consider.

On the other topics that were just covered, one country to which a lot of people from Ireland travel to get treatment is Romania. There seem to be surgeons there who are known for being good endometriosis surgeons.

In regard to the question about the time it takes to get a diagnosis, another factor reflects what happened in my own case. When I was diagnosed with PCOS, I was put on birth control, or hormonal contraceptives, which suppressed the endometriosis. Because the pain no longer presented, I thought it was related to the PCOS and that I was kind of okay. In the 20 years it took between getting the two diagnoses, I suffered from all sorts of other issues, mainly relating to the bowel. I had colonoscopies and so on, which indicated I had irritable bowel syndrome, IBS, and when I eventually tried to conceive a child and was undergoing fertility treatment, my endometriosis was then diagnosed. It then made sense that I had not had IBS but endometriosis the entire time. That is another factor, given hormonal treatment is often used as the first line of defence.

It suppresses things but the disease can still do damage to the body while it is being suppressed and then one finds that out later. It can present issues from a fertility point of view or for other health issues because it had not been treated properly in the intervening years. It is another issue which means it takes time.