“There I was, at 2 am, awakened again by a cold sweat, a sharp pain in my right side and the overwhelming nausea that caused me to keep my jaw clamped shut in the hopes of avoiding an episode of vomiting. I pushed back the covers, slid my feet to the edge and sank to the floor. Quick, what are my options? Crawl to the bathroom in the hopes of retrieving my hot water bottle and lying on the cold tile floor knowing that whatever happens at least I won’t make a mess, or quietly open my bedside table drawer for my collection of pain killers and aromatic essential oils to keep me from passing out? Will I wake anyone? Will either of the options help? Is the pain escalating? Is this “episode” going to make the ER necessary? No, not the ER–what is the point of losing consciousness on the toilet in the ER bathroom, in a puddle of my own sweat, and then being accused of drug seeking? I slump over, right there on the floor beside my bed and wait for the current wave of contractions to pass. Breathe. I can get through this. I’m a rock star.”
How often at work or at school do we look at someone and wonder how they’ve spent their night? If we do, how often do we think, “Hmm, they must have been in excruciating pain.” While some with endometriosis are without symptoms, the majority have spent many days and nights in some semblance of the above state. It might surprise the average person to know what so many intelligent, witty, creative, vibrant, hard-working people are reduced to when no one is looking. It becomes so important to appear “normal” to someone suffering so constantly in this way. This desire to keep up appearances is, in itself, isolating and exhausting.
1 in 10 women suffer from endometriosis. It takes an average of eight to twelve years to obtain a diagnosis. There are some studies citing the amount of lost productivity in the workforce and the cost to nations everywhere, but what about the costs to the human being? It is a real person who goes from doctor to doctor seeking answers, often being told, “You are too young to have endometriosis” or “Your pain couldn’t be that bad. You look fine.” It is a real person leaving a clinic in tears because another physician has told them “Just get pregnant and you will be cured” or “Go see a bowel specialist; your symptoms have nothing to do with endometriosis” or “Your ultrasound was clear; there cannot be any endo in there.” It is a real person sitting at their desk at work, feeling guilty because the fatigue is keeping them from sticking to their work ethic, that is, if they are able to make it in to work. It is a real person at school trying to participate in soccer practice, and not being able to get up off of the bench. It is a real person whose pain keeps them in bed while they long to spend time with their kids.
This is the world of 1 in 10 women, and endometriosis is still a foreign word, believed not to occur in teens or after menopause; it is frequently incorrectly associated with a low pain threshold and a tendency to complain. Endometriosis is still misdiagnosed by perfectly competent physicians, who may not believe effective treatment requires an experienced specialist.
Changing the perception of “endo” in the world that we live in requires education and awareness. The public needs to know what endometriosis is, and what it isn’t. General practitioners need the ability to rule out other conditions, and effectively refer patients to specialists. Specialists need to know that there is a difference between approved treatment and effective treatment.
By The Endometriosis Network Canada
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