March is Endometriosis Awareness month. 1 in 10 Australian women have endometriosis, a condition where tissue similar to the lining of the uterus is found outside the uterus – for example on the reproductive organs, abdominal organs, throughout the peritoneal cavity and even on the diaphragm and thoracic cavity. The disease can effect girls and women throughout the lifespan and causes a myriad of symptoms which may include severe pelvic pain, infertility, pain with going to the toilet, pain with sex, fatigue, gastrointestinal symptoms, and heavy menstruation. The disease effects every individual differently and the average delay from symptom onset to diagnosis is around 7 years (range is anywhere from 5-11 years on average depending on which study one consults).
I’ve known since I was diagnosed with endometriosis that the disease affects 1 in 10 women, but I don’t think I fully comprehended how many women that was until recently. Looking at support pages and seeing how many women shared their stories in these spaces, I came to realise that my story was similar to many others and so different to even more – and that is why every story is important. Being a student nurse, the pool of women I talk to has expanded in the past year and in this time I have become more and more aware of just how many women suffer with endometriosis. Four of my preceptors have had endometriosis – possibly this number is higher, I only found out when I was having a bad enough day with my pain that I had to tell my supervising RN, and they understood perfectly because they had experienced the same pain. In my most recent placement I was chatting with one of the grad nurses over lunch and found out that we not only shared the same disease but the same specialist. We spent a good deal of time gushing over how lucky we were to be under this doctor’s care, understandably – he’s amazing. But what struck me was how she told me, she used the phrase “Me too sister, I have endo too”. Now we call each other “sister” a lot in nursing, it’s the old-fashioned way to address a nurse and in many environments we still use it either as an inside joke (we call the male nurses sister too, and grin mischievously as we do so) or as way of expressing our gratitude. But it’s a term rarely heard among the grad nurses outside the floor. This was a different sister…it was the acknowledgement that having endometriosis gives you a vast universe of endo sisters across the world to share stories with, share experiences, and feel a little less alone.
In just 12 months endometriosis awareness has come a long way. Celebrities such as Daisy Ridley and Lena Dunham have shared their stories and encouraged young women to be assertive and push for care when they feel they are being ignored or not taken seriously. Mainstream media outlets such as The Guardian and Mamamia have featured a variety of endometriosis stories from women’s endo stories to specialists answering non-sufferers questions about the disease to encourage greater support and understanding. I’m starting to feel that more people understand the burden of having this condition and that when I tell people I have endometriosis they do actually know what it is or at the very least have heard of it. Women like Sylvia Freedman, co-founder of EndoActive, have led the way in promoting education about endo. Endometriosis Australia and QENDO (QLD Association) have similar roles, especially in regards to keeping those of us with endo up to date with research about our condition and the treatments available. QENDO held a fantastic event at the beginning of March with the legendary Dr Susan Evans (among others). Susan is a passionate physician who’s book on pelvic pain and endometriosis was one of the first to take a patient-centred and woman-centred approach that empowered women to be their own advocate. This approach is becoming more recognised as patient care in general becomes more “patient-centred”, but women seeking care for suspected endometriosis frequently face barriers to effective care.
Earlier this year I completed a literature review as part of a research course and I focused my question around the “patient-centredness” of endo care. A groundbreaking European study was conducted where researchers developed a tool to quantitatively measure this, using input from specialists, researchers, and a focus group of patients. The study was the first of it’s kind and extremely exciting as both a patient and a health professional. The other studies I included were less optimistic. In fact they were an indictment upon the medical profession. While the studies provided a glimmer of hope that over time GPs have gotten better at treating women with pelvic pain, they also showed that many women had been treated appallingly. At best some women had been misdiagnosed and told that going on the Pill would solve all their problems, at worse they were accused of drug seeking or told that their problems were psychological. In between there were the usual “suck it up” or “every woman experiences period pain” comments and even the suggestion that pregnancy would solve their issues. These studies were conducted in the last ten years, and it is unacceptable that women still face this kind of treatment and discrimination. It was a very different assignment to the one I did in my undergraduate degree, before I was diagnosed, which centred around how women became empowered by online support communities. Here my research was hopeful, inspiring, and spoke to the sisterhood that’s there to support you once diagnosed.
My hope is for a a profession that is well educated and supportive of women presenting with endometriosis and/or chronic pelvic pain. I hope that as a nurse I can be part of that. It is sometimes uncomfortable as a health care professional to read such an indictment of one’s profession, but it’s one we have to look at and then ask ourselves what we can do to better serve our patients. Every day on the wards or in operating theatres or in community nursing I remember that I myself have been the patient and I was lucky enough to receive the best care I could imagine. It is my duty to provide the same care to all of my patients. Women with endometriosis deserve this care, the same as all patients. It is important that we continue share our stories in an effort to educate as many people as we can. The sisterhood has done so well and we need to keep this effort up. EndoMarch 2018 should see even more progress!
Once again, in celebration of EndoMarch 2017, I encourage you to educate yourself. If you’re already familiar with the condition, up your knowledge…talk to someone with the disease and find out how you can support them. Make a resolution to never use the phrase “Have you tried x?”. We hate that…unless you’re a doctor. And even then, specialist preferred. Keep the conversation going!
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