As much as I love Endometriosis Awareness Month — because for such a common condition, it is too little known and too greatly misunderstood — I kind of hate it as well. Yes, I get that it’s a first step, but really?
I’ve lived more than half my life now with endometriosis symptoms — and I expect they will continue for decades to come. Awareness isn’t enough for me anymore.
I want shorter diagnostic delays. Right now, it sits between 7 and 12 years depending at age at symptom onset and the types of symptoms presenting. Certainly, some of that has to do with the reality that laparoscopy is a rather expensive and invasive diagnostic tool. However, as the same linked source mentions, “Diagnostic laparoscopy is not required before treatment in all patients presenting with pelvic pain.” In other words — and this should be common sense — it is possible to treat a person’s pain without cutting them open.
I want health care providers to make recommendations based on the sum of current medical evidence. I don’t want them to limit their evidence to what published studies were available in 1990 or 2000. I mean, I got rid of all my New Kids on the Block tapes, and I’m no longer worried about Y2K. I have moved on, grown older and wiser — and I expect no less from my medical providers.
I want more health care providers to use patient-centered, multi-faceted management strategies. The main reason I prefer my general practitioner to a specialist is that all the local specialists I’ve seen have been single-mindedly enthusiastic (okay, so we call that “pushy,” right?) about their pet treatment options regardless of my concerns and priorities. Even if it is the next new thing, it may come with risks — and “no long term data” can count as a risk — that make it unworkable for some patients.
I want society to treat pain as a legitimate health issue. Not just when it’s the result of a physical injury, not just when it’s impairing mobility, not just when it correlates with infertility. Significant, persistent pain is a big deal because it is significant, because it is persistent, and because it is pain.
I want family, friends, partners, coworkers, and employers to appreciate the frequency, duration, and severity of endo symptoms. Specifically, that these symptoms often extend past the days of one’s menstrual period, that some people experience symptoms daily, and that living with chronic pain can be debilitating. I want to avoid being trapped into unreasonable expectations of what I “should” be able to do.
And yes, awareness is valuable to the extent that it is the first step to all of these. But on its own, awareness is not enough.