Warning: This is going to get heavy on health issues, specifically, women’s health issues. And because I’ve been blessed with so many of them, this is long. Read on at your own risk.
I recall feeling jealousy when my friends started getting their periods. Yes, really. At 12, I was already jealous that I didn’t have those days when I could just stay home and have an afternoon full of delicious ice cream, video games, and grungy sweatpants. I wanted that time to connect to myself as a woman, to do what I wanted and really be into the crazy things my body was capable of for those 4-7 days. This fantasy was probably spurred on by some Gen-X tampon ad I saw once, but it was something that I wanted, dammit. I wanted to be a woman.
Forgive me. I was a very repressed child. And because my life is some kind of ironic dramedy, I look back at my wishes and shake my head. Had I only known.
The first time I got my period, I nearly vomited in fear. I set myself up the way I had been taught — with a giant-ass maxi pad — and inspected myself in the mirror. I could see that I was pale, but other than that, there were no other indicators that I was now a “woman” like my friends. The whole experience was a little underwhelming, but somehow, this physical confirmation that I hadn’t really changed actually helped alleviate my apprehension a bit. I sort of felt like I did most other days, except I knew what my body was now capable of, in theory, anyway. But in the following months, I quickly grew to recognize the cramps, lower back pain, bloating, and sheer rage associated with getting my period. It made me feel anything but special, and I began to regret wishing for this mystical woman-defining experience. It felt like a nightmare.
I recall going into a doctor’s office for a physical required before I entered high school and the doctor being quite concerned at my description of pain that I associated with menstruation.
“You indicated that you have a pain level of at least 8 during your period, sometimes a 10? Are you aware that that is the worst pain you could imagine?”
Well, yes. It was the worst pain I’d been through. Physically, at least. I recounted to her how I had vomited because of my nausea, and how at times, the only thing that made it bearable was laying on the ground, curling up into a fetal position, and waiting for my Ibuprofen to kick in. I felt ridiculous when it happened, like I was physically trying to crush my uterus from the outside in, as if I was too weak and childish to even handle being a woman. But if I didn’t soothe myself somehow, it felt as if my insides were being squeezed, twisted, and yanked out of my body; it was a constant stream of pain that frothed and bubbled well beyond my control, and one that abated only when I medicated heavily. I would grind my teeth and wait it out every month, like clockwork.
Then we talked about how much I bled. I mentioned waking up several times during the night, jolted to consciousness by debilitating cramps, then running to the bathroom, bent forward at an awkward angle in an attempt to keep my clothes unsoiled. Sometimes it was three times a night. I had begun to wear pads and tampons simultaneously and still managed to ruin half a dozen pairs of underwear. I had lost sleep, and I’d had a hard time making it through classes without needing to use the bathroom.
The doctor listened, then opted to test me for anemia, telling me that what I was experiencing wasn’t normal. The results showed that I was borderline anemic, but they said that if I just ate more Iron, I’d probably see improvements. I felt satisfied enough with this answer.
At this point in my life, my mother was struggling. After my sister’s death, had become embattled with depression and anxiety. She had unresolved anger, and her life had essentially completed the process of unraveling with my father’s departure. She was put on birth control partially to help her with her depression and anger (which peaked about three days before her period was due), and partially because it made her periods manageable. This had never meant anything to me personally until I was told that my periods weren’t normal. And I still recall the morning it all became crystal clear to me.
It was 5:15 am. She flung my door open angrily, demanding to know what the hell I’d done with her eyeliner. I didn’t know; I was half asleep. She screamed at me to get up and find it. She panicked, she cried, she told me that if I couldn’t find it, I would buy her another. It didn’t make any sense to me. Why was this such an issue? It was 99 cent Wet N’ Wild eyeliner from Wal-Mart. I told her this — it’s replaceable, it’s cheap, and if I did lose it, that I was very sorry, and yes, I’d get her whatever she wanted. It wasn’t good enough. Out of bed I went, crawling around and looking for it on the floor, through all my pants pockets, and rummaging through the bathroom drawers. When I came up empty-handed, she stormed off and slammed the door to her bedroom, absolutely destroyed at the thought that I’d lost her fucking eyeliner.
I looked at her birth control packet later. She was nearing her period. I recognized a host of her problems reflected in my own life: the irritability, the depression, the agonizing pain and fear of menstruation. It didn’t matter if I ingested more iron. This was deeper; something I didn’t fully understand. But how could I talk to her about it? She’d never put a 14-year-old girl on birth control, and I was repeatedly told that it was weird or dirty to talk about this, or any sort of thing relating to women’s bodies or sexuality. That it was shameful. So I tried to plan my outings around my cycle, and I became increasingly conscious of my changing body — I’d gotten softer, with fat in all the areas that I used to have bone. Guys noticed, and I practically caved in on myself. I didn’t know how to respond. I stopped going swimming or wearing shorts. I told no one of what it was like inside my mind or my body. I carried it with me through high school and my first relationship, unaware of the damage it was doing to me.
Then, when I was 19 and in my second serious relationship, I began cutting myself in an effort to redirect my pain. The depression associated with my cycles had spiraled beyond my grasp, and I was so tired of dealing with the monthly roller coaster ride. By the time I moved out of my mom’s place, I began looking for a prescription of birth control for myself, trying to yet again contain the discomfort and discord that came with every passing month.
It took me almost a year to find a brand that would work with my cycles, and I stayed on that birth control diligently for about three years, until it was discontinued due to a law suit over a young woman’s death. While on the Pill, I noticed that my periods got much better, but my mood swings could still be quite severe. The pain associated with menstruation was still bad, too. But it was still preferable to the tumultuous, unpredictable periods of the past. I got through the rest of college with myself relatively intact; I was dealing.
By the time I’d begun grad school, though, I was off the Pill and the migraines had started. I muddled through my Master’s, but as soon as my classes finished, the economy crashed and I was forced to move home. Too poor to afford any medication and too depressed to feel as if I was worth anyone’s time, I spent the next four months trying to find a mediocre job and deal with my pain. I ended up leaving my boyfriend (for a number of reasons, which I won’t go into here) and took a traveling job, hoping that travel would help me feel something again. And it did, for the first two months.
Then I had my heart stomped on, and a week later, I was sexually assaulted. I ultimately ended up in a predicament far too complex to address in this post. Completely and utterly defeated, both emotionally and physically, I went back to my ex. I had a very rough but necessary surgery. We got engaged, and got married in Las Vegas the following summer.
After our reception, I begun to feel that familiar pain of ovulation, which was always on the right side; but I felt it shooting through my leg, which wasn’t normal. I knew that things were a bit unpredictable with my body since the surgery the year before, so I figured it would go away eventually. But it didn’t. For an entire month I felt the shooting pains in my leg and the right side of my torso, and my period was god awful that month. I made an appointment to have an ultrasound done, thinking it to be a cyst pressing on a nerve.
$650 later, I discovered it was a cyst, but I was told I needed to see a health specialist about my problems. Again, the doctors said that the level of pain I had was not normal. I scheduled my appointment and discussed my options with my doctor a month later. She stressed that it was probably endometriosis. But, there is no way to diagnose it unless she does a surgery called a laparoscopy, in which she will blow up my abdomen like a dome and send a probe and laser through my belly button. This is an elective surgery, so my insurance will not cover it. She suggested getting pregnant or trying birth control as alternatives to the surgery. I opted for the latter.
Two months later, I took the placebo pill before my period. I had been crying for 10 hours at this point. I couldn’t sleep. All I can think about is throwing myself off a bridge. Over and over I played this scene in my head. I crumpled up on the floor, feeling like I had no choices, no control over my own life. I couldn’t get time off from work, I worked in an abusive climate, and I had no time to recover between lengthy work trips to even catch up with my doctor. I knew that I couldn’t make it another month on this Pill. I couldn’t do this anymore. I just couldn’t. 8 hours later I went to bed, vowing to get the surgery. At least then I’d have an answer.
Three months later, I wheeled into the operating room. I remember seeing my husband turn to go to the waiting room while I stared up at the bright lights on the ceiling. That was the last thing I remember until I suddenly was wide awake, with my doctor looking at me.
“Can you feel anything?”
I nodded. She indicated for the nurse to give me a shot of morphine. My insides felt like someone had lit them on fire and they were melting from between my legs and into the bed. I had a vision of my uterus slinking out and falling onto the floor, covered in lesions and pustules; a visual confirmation of the sickness that had been slowly poisoning me for all these years. A few precious seconds later, the pain started to fade. She asked again if I could feel anything, and I nodded once more. They gave me another shot of morphine and I felt numb. I looked at my doctor.
She then told me I had an incurable disease, for which there is not one guaranteed effective treatment. I have just been told that it wasn’t all in my head — and for this, I am grateful, to know why I suffer — but that it will never end. Not even after I go through menopause. Because it puts me at a greater risk for depression, anxiety, allergies, asthma, ovarian cancer, and of course, scarring and pain.
Over the next few days, I was forced to recover quickly. Work needed me across the country in less than two weeks, and the doctor refused to sign a slip unless I’d recovered well enough to fly. The first day was agony. I shuffled like a 90-year-old woman to and from the bathroom, not even able to sit up or walk without the assistance of my husband. I was bleeding out destroyed endometrial tissue and I had my period at the same time (it was planned this way), and if you’re thinking that’s gross and horrible, you’re right. It was utter agony. But I viewed it as a badge of honor: I am over this hurdle. I will start managing my condition, rather than simply dealing. I spent the time recovering and I flew to New York City for work…
…Where we had our busiest trip to date. Of course we did. We had hundreds upon hundreds of people clamoring through the doors for our jewelry appraisals, and I was desperate for an easy task, something my body could handle. But because we were so busy, our show got extended by two weeks, allotting me zero days off. And then I got a full-fledged period. It was the ugliest, nastiest, most unmanageable menstrual cycle of my life. I bled so much that I couldn’t function at work — every 20 minutes in or out of the bathroom to change hygiene products; unable to even concentrate because the cramps were so awful. For three months this trend continued. My boss even knew when I was menstruating because I’d get so pale and shaky. I cursed the decision to drop $4000 on a surgery. It was supposed to help me, but I just felt worse.
I fought my way through it, month by month, and my periods slowly returned to the old normal. It’s been about two years since my diagnosis, and my pain is more sporadic rather than constant. I still bleed a lot. I still try to take care of myself, and I have tried to educate myself on endometriosis. I manage it.
This is why I decided to participate in a study regarding the testing of a pain medication for those who suffer with endometriosis. I was so excited at the prospect of medicine designed for my disease. I went through the screening — tested great for blood pressure, heart rate, weight, and everything. Which is why, on Monday, when I got a phone call from the clinic, I assumed it would be to tell me that they were ready to schedule the next phase of the tests for me.
Instead, I was informed that I have osteopenia in my lumbar spine and left hip; osteoporosis on the right hip.
I have no doubt in my mind that this disease, which has already robbed me of so much, is the engine controlling the machine that silently desecrates my body. At 28, I did not expect to hear that my body is being starved of nutrients as if I were postmenopausal; that these phantom aches and pains I feel are no longer only due to the incurable disease that I have; the one that people haven’t heard of and don’t know how to treat. Now it’s something else. Now it’s morphing into something even uglier, even more bizarre and unworthy of my energy. And if the two are indeed connected, all this means is that it. Will. Never. Stop.
I talk to a doctor about what I can do for myself to fight it on Monday. I just had to write it down before then, to tell the story that many women who suffer with endometriosis want to tell. There are more of us out there than you know.