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.
In
the locker room, especially throughout high school gym class, we'd
often ask one another for some kind of menstrual product. But when it
was discovered that I didn't use tampons, a few of the more popular
girls in my grade told me I was "gross" for using pads, which they
equated with wearing diapers. Usually I didn't let stuff like that get
to me, but I lived in a constant state of embarrassment over how hard my
periods were. I figured I must be weak if they bothered me so much.
Sure, lots of my friends complained about their periods, but they didn't
miss school or have to stay in bed all day. And they definitely didn't
sleep on towels or fear spending the night at a friend's house, where
they might bleed all over the couch.
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.
When
I was 19 and a sophomore in college, I got really sick and no one could
figure out why. It seemed to start after a few months of missing
periods, only to then get one so bad that I started seeing clots the
size of half-dollars in my underwear. I would get weak, shaky,
nauseated, and experience horrible, aching, throbbing pains in my belly,
pelvis, and lower back. I thought it was just from the stresses of
college life, but when I ended up in the emergency room twice in two
weeks, I had to confront the reality that something really wasn't right.
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.
This essay has been reviewed for medical accuracy by the Endometriosis Foundation of America.
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