My Diagnosis Journey

I got my first period when I was only a few months shy of 10 years-old. For the first few years, my periods were sporadic and I was prone to skipping months. However, by the time I was twelve, they were mostly regular, though they still were not particularly painful. All of this changed by the eighth grade.

My new "normal"

Suddenly, my periods had become agonizing events. I bled so heavily, I got into the habit of doubling-up my maxi pads. Even with this precaution, I sometimes bled straight through them and stained my skirts and panty hose. I found myself either going home sick or staying home from school most months I had my periods. These days were not recreational for me: I was bed-bound almost the entire time, curled into a fetal position with a scalding hot water bottle on my low belly. This pattern more or less continued through high school and even college. While I occasionally had a period that wasn’t too bad, most months were terrible and I usually dreaded the arrival of my period.

Searching for answers

I wondered if this was normal, because even though my girlfriends in high school also complained of cramps, they weren’t so bad as to necessitate them being in bed all day and missing a day or two of school almost every month. Was I just a wuss who couldn’t handle pain, or was something wrong with me?

I got my answer one day in my early teens when I was flipping through some dusty old medical books on my grandmother’s shelf and landed in the 'E' section. I came across the term "endometriosis" and read the description. I instinctually knew that this was probably what I had. Of course, both then as in now, an endometriosis diagnosis could only be confirmed with surgery. So even though I was convinced I had endometriosis, I couldn’t officially claim is as an excuse for my absences and convalescent behavior every month.

A full-body attack

About mid-way through college, I began to experience new symptoms that I didn’t immediately associate with my period problems. Namely, I began to have a lot of GI upset and digestive issues, that caused me to constantly monitor how close I would be to a bathroom at any given time. It became so bad that I worried about eating, traveling, or even going very far from my dorm room. And though my GI problems plagued me all month long, I did notice they were always much worse right before and during my periods. My intestinal issues eventually escalated to such an extent that I lost over twenty pounds in four months and was forced to take a medical leave of absence from college for a semester. A slew of tests revealed nothing out of the ordinary, and so I was slapped with a diagnosis of Irritable Bowel Syndrome and dismissed without any more concern for my situation.

During the whole ordeal, I had explained to the rolodex of doctors I consulted about my period problems and asked if they could at all be related to my IBS, but I was either ignored completely or scoffed at.

Hope for a diagnosis

My answers would come a few years later, when I moved to Massachusetts from New York and qualified for Medicaid in my new state. Unlike my previous insurances, MassHealth was willing to pay in full for my laparoscopy to confirm what both I and my new gynecologist suspected. The surgery revealed that I had widespread and severe (Stage III going into Stage IV) endometriosis throughout my abdominal cavity. In particular, I had a ton of endometriosis wrapped around and strangling parts of my large intestines and adhering my colon to my ovary and fallopian tube. The doctor managed to remove most of the endo and free my colon. We both agreed that the disease’s invasion into my intestines were probably at least partially (if not primarily) responsible for the severity of my IBS.

Within about four or five months of the surgery, I experienced a significant decrease in my GI symptoms and my periods were also less painful (though still far from painless). Most of all, I benefited from the relief of having my experience validated by a diagnoses and knowing the pain wasn’t “all in my head”. That alone was well worth the surgery.

Be your own advocate

If you suffer from debilitating periods and suspect you have endometriosis, trust your instincts and ask a gynecologist whom you trust and who is open to listening to your experiences and working with you to get to the bottom of what is going on in your body.