Endometriosis: Continuing the conversation as the awareness month draws to a close

The personal impact

As someone with chronic pelvic pain, stories about pelvic pain and endometriosis are of particular interest to me. I haven't yet got a formal diagnosis of endometriosis, because that means going under the knife (to my understanding) – something I’d prefer to avoid unless absolutely necessary.

Pelvic pain and painful periods have been around for most of my life now. It's hard to remember a time where it wasn't something that was on my mind. At times, it can become all consuming; the clothes in my cupboard become too uncomfortable to wear, I struggle to exercise (like at all) and the fatigue means I'm dragging myself out of bed and through the day. I know I'm not alone, and that helps to a degree, even my best friend has diagnosed endometriosis and we lean on each other a lot, but it doesn't stop my curiosity to learn more about this condition, and to try and navigate a way forward.

Every story about endometriosis shared on Care Opinion I find special connection with. From the stories where the author has finally gotten surgery and received a validating diagnosis, and I can feel their relief. To the stories where the author feels they just aren't being listened to, because listening to understand is different to listening to respond; I can feel their disappointment and frustration.

In previous years, I have run in-office morning teas for endometriosis awareness month or even worn yellow every day of the month to raise money. This year, I was fresh out of steam, and with a recent escalation in my own symptoms, just too tired to be honest! So last week, I sat down to look at some endometriosis stories on Care Opinion to inspire me. In doing so, I ran a report on all stories told on the Care Opinion platform about endometriosis, and I found my answer in the results.

Be warned: this blog is turning from personal to report from here on!

What do the stories show?

The results painted a pretty clear picture. We've got some work to do.

Let's take a look at criticality as a starting point. Stories on Care Opinion, as they pass through moderation, are rated based on the most critical sentiment in that story. A criticality 0 is 'not critical' or 'purely positive'. Conversely, a highly critical story (4 or 5) is considered quite serious. Any story with a criticality rating of 3 or above has some clinical sentiment.

That explanation behind us, let's delve into the numbers.

Across all stories told on Care Opinion more than half are purely positive. This reflects that, on the whole, there is some really wonderful things happening across healthcare in Australia (as a very simplistic evaluation). For stories tagged with 'endometriosis' only 16% of those stories are purely positive. That doesn't mean that there aren't positive sentiments in some of the other 84% of stories, but it is a wildly lower number than over 50%.

The total percentage of stories with a criticality of 3 or higher, is 60%, which is immense. In comparison, only 20.62% of stories on the platform are a criticality 3 or above. Considering these are stories relating to clinical treatment (i.e. pain relief, diagnosis etc.) this highlights a significant gap in the quality of care and support being provided to people with endometriosis.

Finally, I would like to delve into the tags. Tags are split into three groups for reporting:

• negative tags (what could be better?)

• positive tags (what was good?)

• feeling tags (how did you feel?)

The most commonly used tags (by percentage) are, in pain (28%), clinical treatment - pain relief and waiting - response time (24%), communication - listening to consumers (20%) and dismissed (14%). In comparison, the most commonly used positive tags, staff conduct - kind, communication - explanation and person centred care - support only appear on 6-8% of stories.

This may just reflect the split in criticality, but what it also tells me is that in those 84% of stories with which there is some level of criticism, there is likely not a lot of positivity either.

Reflecting on these stories offers powerful insight into the real experiences of people navigating endometriosis care - and highlights how much more needs to be done.

What now?

While this may all seem very concerning, to me, it reflects fairly accurately my own experiences. I am choosing, however, to be positive. I count my blessings in a loving and supportive husband, family and workmates. I hold high hopes for the future of care for people with endometriosis, and my future care.

I'd love to hear about your experiences of care (tell your story with Care Opinion!), and if you have any thoughts regarding this blog post and where we need to go from here, please comment below!