If only I had been diagnosed with endometriosis years earlier.
My first period came on Thanksgiving when I was 12 years old. I spent the entire day in the bathroom bleeding and bent over with terrible cramps and feeling sick to my stomach. I hoped that it was only so miserable because it was my very first period, and that as I got older and they became more regular, they would get better. I was wrong.
Over the next few years, the timing of my periods became fairly regular, but they were always accompanied by painful diarrhea and nausea that often struck me in the middle of the night, and bleeding so heavy that I needed to wear several overnight pads at once. I tried to use tampons, but no matter what brand or size I tried, they were just too painful. Later I would learn the reason or that, but as a teenager I was just frustrated because I was teased for using pads.
I usually bled heavily for seven days each month, and that would make me very fatigued and run down. I was really busy at school and involved in a lot of activities, all of which I was very passionate about. It always seemed unfair to me that this supposedly natural process that every woman goes through hit me so hard that I had trouble functioning. As if gym class wasn’t hard enough, I routinely doubled-over in pain, sitting on the sidelines when actually, I would have preferred to be playing. I would have enjoyed doing sports, but those totally embarrassing locker room experiences made me afraid to even try out.
I figured there must be something wrong with me that made me such a wimp, but I couldn’t talk to anyone about it. Throughout my teen years I was on my own, having left home at 12 to live with my grandmother. I became emancipated at 16. I didn’t really have a mom to confide in about anything, let alone my periods. For medical reasons, my mom hadn’t really had periods at all for many years, so I couldn’t even look to her menstrual cycle for clues. At times, I worried that I just didn’t know how to be a woman because my mother had not been there to show me.
At times, I worried that I just didn’t know how to be a woman because my mother had not been there to show me.
While I was out of school trying to get to the bottom of what had made me so sick, I did a lot of research. When I came across a condition called endometriosis, I looked at the symptom list and immediately started to cry. It described my experiences, right down to some of the weird stuff I thought only happened to me, like having pain when I went to the bathroom during my period. I thought it was probably the culprit. After many doctors and surgeries, the diagnosis was confirmed.
Endometriosis is a condition where tissue similar to the lining of your uterus, which you usually bleed when you have your period, is found elsewhere inside your body. It usually stays close to your uterus, in places like your ovaries, fallopian tubes, and the space in your pelvis around your reproductive organs. It can also remain on your intestines, bladder, and kidneys. Some women have had endo in their lungs and brains. Endo lesions respond to the changes in your hormone cycle: when you have your period and your uterus sheds its lining that has built up over the month, endo lesions, wherever they are, respond by bleeding, too. Except unlike the lining of your uterus, which passes out of your body, the bleeding from the endo lesions has nowhere to go. Instead, it just causes inflammation, and often, a lot of pain that can last all month, not just during your period.
The truth is, we don’t understand exactly how endometriosis works. In fact, science doesn’t even really understand what a normal period should look like. For girls who have endo, they can have really severe period cramps, so bad that it makes some throw up. It also causes fatigue, heavy bleeding, gastrointestinal issues, and can make it difficult to get or stay pregnant. Some women don’t have any symptoms at all until they decide to start trying to have children, though not all women with endometriosis will have trouble getting pregnant.
Since my diagnosis, I’ve had a couple of surgeries, but I’m still in pain — and not just when I’m on my period. Some months, I’m in pain more days than I’m not. There are several ways to manage endometriosis, but no cure. Some women I know have had good luck taking continuous birth control or having an IUD. I took continuous birth control pills for several years until they stopped making the ones that worked for me. I haven’t found another kind that has worked as well. Then, I got an IUD and although it didn’t help my endo symptoms too much, it did make my periods lighter. Unfortunately, possibly due to scar tissue from endo or surgery, when I had the IUD removed, intending to get a new one, I passed out from the pain and didn’t get a chance to have it replaced.
None of these things cure the disease, though. Many women have found that the closest they have felt to relief from endo symptoms came from a special kind of surgery, done by only a few specialists, called laparoscopic excision surgery. But because there aren’t a lot of doctors who do it (and do it well), it can be hard for women to access.
For many years, especially when I was a teenager, I felt ashamed of my periods. I was angry and disappointed that I couldn’t seem to tolerate them the way the other girls at school could. I was mad and confused about how they seemed to make it so hard for me to just do normal, everyday things. When I discovered there was a reason why, it was bittersweet. I was glad that I wasn’t “crazy” or “weak,” but I was also scared about what it meant to have the disease in the first place. I’m 25 years old now and endometriosis has impacted everything from my ability to participate in activities like dance, which I used to love, to being intimate with a partner.
I know I’m not alone, though, and that’s why I speak out.
I wish that when I was a teen, in the locker room with those girls who made fun of me for not being able to use a tampon, I had spoken up about my period. I wish I had told them that I struggled, that I was afraid it wasn’t normal. I wish I’d asked them how it felt. If we talked about our periods, I bet I would have figured out a lot sooner that mine weren’t normal.
And who knows? Maybe some of those girls would have spoken up about their challenges, and all of us would have realized we weren’t alone.
Abby Norman is a writer based in New England. She is working on a memoir for Nation Books.