VI International Congress on Endometriosis

Patient panel satellite event

Summary of a talk given by Angela Barnard, Chief Executive, The National Endometriosis Society, UK

It is strange to listen to the data collected by the Endometriosis Association, as I was one of the women who took part in the original study which the Society carried out in Britain in 1994. In those days the average delay in diagnosis was 7 years and I am sorry to learn that the figure is currently higher than that in North America. I hope that situation improves soon. I have to confess that I am one of those responsible for keeping the UK average up at 7 years, as it took over 20 years for me to receive a diagnosis.

For some women in the UK it is still taking many years to be diagnosed, and it begs the question, why - as we approach the end of the 20^th C - is this the case? There seem to be two reasons, the first of which is misdiagnosis. In my own case, and that of a number of other women, presenting with symptoms in the mid-teens met with the response that I would grow out of it. By the early twenties I was told that it would improve after I had children, but that taking the oral contraceptive pill would also help. By the late twenties, presenting with persistent, right sided, lower abdominal pain, I was diagnosed as having appendicitis and, as I later discovered, a perfectly healthy appendix was removed. Not surprisingly, the symptoms did not disappear and, after a vast number of diagnostic tests I was diagnosed as having Irritable Bowel Syndrome. I was soon presenting again and, after another raft of tests, an ovarian cyst was found on ultrasound scan. At this point I was told that cysts were usually a-symptomatic and that it was not sufficient grounds for referral to a gynaecologist. However, I was finally referred, and was booked in for a urgent laparoscopy.

Like many women, it was as I recovered from the anaesthetic that I heard the word ‘endometriosis’ for the first time. At first it was a relief to have some affirmation of the symptoms that had persisted for so long. However, this soon turned into a nightmare as successive hormone therapies either had no effect on symptoms or produced intolerable side effects. The years of trying to cope with the disease seemed like a mere rehearsal of trying to cope with treatment! It was at this stage that the second problem became apparent, namely lack of dialogue. Throughout the years of trying to get a diagnosis, and now, in a maze of unsuccessful treatments, dialogue was conspicuously lacking.

It was through the National Endometriosis Society that, like so many women, I discovered that there were specialists in this disease and, thankfully, my GP agreed to refer me to one of them. Suddenly someone was explaining what was happening, outlining what treatments could be offered next and what the likely effects and outcomes of these would be. I was being offered information and the opportunity to make a choice. I elected to undergo radical surgery and have never looked back. Since then I have enjoyed a level of good health and vitality that had not been evident since my early teens. Obviously, such surgery is not appropriate for all, and it is saddening to hear from some women in the UK who are still being told to become pregnant or have a hysterectomy. We are beginning to see an improvement in the time it takes women to receive a diagnosis, and this is encouraging. But for all those who are connected with this disease there are two challenges that I would like to suggest, and I hope that all those who like challenges will take them up. The first is to do everything possible to reduce the delay in diagnosis and the second is to develop treatment plans for individuals which arise from dialogue and informed choice.