Sunday, March 2, 2014

March is Endometriosis Awareness Month--What Does Endometriosis Feel Like?

I think one of the biggest impediments and delays in endometriosis diagnosis is that we teach our girls to expect pain during menstruation, and they do not know how to distinguish "normal" menstrual cramping from pain symptomatic of disease pathology.  Another impediment is that we are illiterate when it comes to speaking and understanding pain language.  We do not have an objective instrument to measure the kind and degree of pain we experience.  There is the pain scale found in nearly every doctor's office.  The faces representing 0-6 range from looking happy to mildly constipated. 

As an endometriosis patient and someone with a genetic spine malformation, for pain that looks like it would measure 0-6, I would not go to a doctor's office.  I would manage it on my own and hope that tomorrow is better.  For many endometriosis sufferers who have acute episodes of pain and present to doctors' offices or the ER, which is often a humiliating experience, it becomes a delicate negotiation between trying to explain your pain and trying not to look like a "drug seeker."  Unless you have a gunshot wound, a rusty nail sticking out of your eye, or pieces of a dashboard impaled in your chest, reporting a 10 will get you labeled a "drug seeker."  The choices left are 7, 8, and 9.  

Perhaps a better scale comes from one of my favorite blogs, Allie Brosh's Hyperbole and a Half.

In addition to difficulty in describing intensity, there is the difficulty of describing the quality of pain.  Some descriptors that physicians use include: aching, burning, cramping, crawling, crushing, heaviness, icy coldness, intermittent, numbing, piercing, pounding, pressure, sharp, shooting, sore, stabbing, tearing, tenderness, throbbing, tightness, and tingling.

If I had to describe my worst endometriosis pain, prior to having spine surgery, I would have described it as a 10.  Spine surgery is my new 10, and my worst episode of endometriosis pain is a 9.  I would describe it variously as aching, burning, sharp, shooting, and especially stabbing. When I described it to my endometriosis excision specialist, I said it felt like what I imagine it would feel like if a little monster was inside my abdomen and pelvis stabbing me repeatedly.  I've never really been stabbed before, other than perhaps with a pencil in elementary school, so it is hard to say.  It was definitely qualitatively different from the intestinal cramping experienced during a bout of diarrhea.  

Along my journey to an endometriosis diagnosis and treatment, I was referred to a GI doctor as my diagnosing ob/gyn did not believe me when I said I felt worse after he fulgurated (burning the surface of endometriosis lesions) the endometriosis in what was supposed to be a diagnostic laparoscopy.  This ob/gyn said that I probably had IBS too. Fortunately, the GI doctor he referred me to was a kind, wise country doctor who said that IBS was largely a catchall diagnosis when doctors have no other explanation for abdominal/pelvic pain.  He asked me to point to where it hurt, and I did.  I pointed to the left side of my pelvis, one space just above my hip, all the way up under my ribs, and radiating to the flank.  He asked me if the pain was always in the same place.  I said yes, and he said that it is not IBS then.  It is endometriosis.  I have to thank that country GI doc.  He saved me from returning to an ineffective ob/gyn and sent me along my way to finding definitive care at the Center for Endometriosis Care in Atlanta.

I have "met" women in various on-line support groups who have described endometriosis pain as worse than labor.  I recently saw a story on a local TV news station of a woman who unwittingly gave birth "naturally" in her own home, with her husband and a late-arriving paramedic assisting her.  She did not go to the hospital when labor pains started because she did not know she was in labor.  She expected labor to be more painful than her battle with endometriosis.  

What does your endometriosis pain feel like?  Please comment and share!  The more we can do to empower others to recognize when their menstrual pain is not normal, the better their health outcome!