Real Talk: What It's Really Like to Live With Endometriosis

woman in pain

I got my first period when I was 12. I was riding my bike with a friend in the neighborhood and went inside to use the bathroom and saw a dark stain on my underwear. I quickly changed my underwear and went back outside. Later, when I used the bathroom, I saw the dark stain again. I didn’t know what it was until it suddenly became clear: I had gotten my period. I called my mother at her work to tell. She didn’t say much, but told me where to find the feminine pads.

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The only book that had prepared me for my period was Are You There God? It’s Me, Margaret by Judy Blume. I had read the entire book several times (though I'd found the kissing-the-pillow scene the most fascinating), so I sort of knew what to expect. The only negative thing about the book is that it lacked the gritty details of what a period is truly like. For the next 30 years, my period became a traumatic, unfriendly experience, something I had to endure basically every 15 days, if you included premenstrual symptoms.

At 12 years old, my menstrual cycle came slowly, but after a year, it had blown up to full-on regular cycles, complicating my normally uncomplicated existence. I was in seventh grade and didn't know how to cope with the massive blood flow -- a gush of warm liquid oozing out of me, how to carry my period products around school discreetly (I ended up using toilet paper on top of the saturated pad instead of changing pads), and what to do if blood leaked through my pants (wrapped a sweatshirt around my hips). And there were period days that were so bad I would have to go to the nurse's office and lay on a cot, unable to explain why I felt so lousy.

One day in school during physical education class, I had to run a timed mile. I had my period and ate a chocolate Pop-Tart, thinking it would give me a burst of energy, but instead (as I later learned chocolate aggravated cramps and caused bloating) I experienced debilitating cramps. After the run, I just lay in the mud on the track. My friend was annoyed that I was splayed over the tracking, thinking I was being overdramatic about the challenging sprint. The gym teacher wasn't very empathetic either, asking me in an obligatory tone if I was okay. But they had no idea how I was feeling. This was a pattern, sadly, that seemed to be permanent, or until I hit menopause, which was nearly half a lifetime away.

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The pattern was more than a pattern. It happened like clockwork every month. The only way to cope was to take ibuprofen when I felt an inkling of pain -- and then I would be able to prevent the waves of debilitating cramps that someone likened to contractions during birth. But there were pain episodes that stuck out because I didn't have those over-the-counter drugs on hand: In the summer of 10th grade, my family went on a trip to South Korea to my grandparents' house. I had stuffed my suitcase with maxi pads, knowing it would be embarrassing to buy them in a different country. I was completely mortified at Customs when the officers starting pulling out the maxi pads from all corners of the suitcase and scrutinizing them.

While at my grandparents' house, I had forgotten my ibuprofen and was bombarded with a surge of cramps. I couldn't buy drugs because I didn't speak the language, so my mother sent my dad out, and he delivered the pain medicine to me in a pink paper bag.

There was the time right after a pop quiz in history 11th grade where I left the test blank because I was in so much pain. The teacher wrote me a pass to the nurse's office and another female classmate took me there. When she asked me what was wrong, I burst into tears.

Then there was the new job after college. I had started working at a newspaper as part of a training program. One day a few weeks into the program, I was overcome with crippling pain in my abdomen that didn't feel like a cramp but was related to my menstrual cycle. I called the doctor's office and asked if I could see a doctor right away, but no doctor was available. About two hours later, the cramps just disappeared. In a discussion with the doctor afterward, he thought a cyst might have burst because the pain was so acute. I called my boss and told him that I felt better and wanted to come in to work -- when I showed in the newsroom, the news desk applauded.

By my 20s, life had become a cycle revolving around my period: 12-13 days period-free, 3-4 days of premenstrual cramps, 10-day period with heavy blood flow (five to seven days) and with cramps (five days). Those days of normalcy every month didn't seem that many. My menstrual cycle dictated my life -- what I could do and what I couldn't do. Forget about swimming -- that seemed like the ultimate nightmare. The whole thing was depressing. But I had gotten very efficient at dealing with the traumatic periods -- popping four to five Advil or Motrin as soon as I felt any pain, outgrowing my embarrassment carrying around tampons and pads in a floral cosmetic bag, and just having specific clothes to wear when I had my period (dark pants) and bad underwear (period undies). Painkillers had become the only way to kill pain -- but I had to time it perfectly to not feel any pain. I would use about 10 tampons a day and two to three pads. And while my friends could use a tampon and no pad, I had to have a super pad and a super tampon yet still had leakage.

I also had every possible period product available: every size of pads -- panty liners, thin but long pads and super maxi pads -- and normal and super flow tampons. I was very excited when the maxi pads with wings came out.

I went to several doctors to find out why I had such severe pain and terrible periods. Some of them suggested that I might have endometriosis, a chronic condition in which tissue that normally lines the inside of your uterus grows outside the uterus on the ovaries, fallopian tubes, bladder, and other areas of the uterus. When I asked how to find out for sure, the doctors always said there wasn't a way to confirm except for surgery where they could see endometrial implants and scar tissue. I finally went to another OB-GYN for an examination, and after poking and prodding, she deduced I would be in more pain if I had endometriosis. She was mistaken.

I was in a theater in Santa Monica, watching the movie American Beauty with a friend, when I knew something was wrong. Very wrong. The pain was different -- not like a menstrual cramp but something more intestinal. Halfway through the movie, I asked my friend to take me to the emergency room.

"Right now?" she asked, as red rose petals fluttered across the screen.

"Yes, now."

At the ER, I looked at an ultrasound image that showed that I had a very large cyst on my right ovary, which was causing the intestinal pain. I was referred to a new OB-GYN, who said I needed to have surgery right away.

"You have endometriosis," she said. "We need to remove the cyst and see what other endometriosis implants and adhesions you have." She said that it was likely that it was a mess inside.

The surgery was urgent, but the doctor had to deal with the paperwork, so I agonized in bed for three days before the procedure. The doctor was worried that the ovary would "twist" from the large cyst. The cyst was the size of a small cantaloupe and there were a lot of other growths and scar tissue.

My doctor wanted me to keep everything quiet and put me on this life-changing drug, Lupron, for six months. I loved being on Lupron. It's a powerful drug with many side effects similar to menopause, such as bone density loss and hot flashes, but I felt so free and liberated: no cramps, no blood, no bloating. I didn't have to worry about traveling while on my period, I didn't have to worry about what was happening at work on the days of my period, I could wear anything I wanted. This is how life should be, I thought. When you don't have pain, you forget what it's like to have pain. I felt amazing and told my OB-GYN that I could climb Mt. Everest.

Lupron did cause bone density loss (I had to get bone scans several years afterward and I have chronic back pain, which I think stems from the treatment), but the endometriosis grew back and three years later I found myself at the Mayo Clinic having another laparotomy, the surgery where you are cut open.

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The reproductive endocrinologist said that my ovaries could not endure any more surgeries, and if I wanted to have children, this would have to be the last one. Doctors also said pregnancy could suppress endometriosis because you weren't menstruating, mildly hinting that I should have a baby. I was 30 years old and single -- how and why would I have a baby now? My OB-GYN in LA said that when I was ready to have children, we would have to do a test to make sure the fallopian tubes weren't blocked with any growths, and that after I had kids, she advised getting everything removed: uterus, ovaries, fallopian tubes.

Later, when I was married and trying to have a baby, another reproductive endocrinologist gave me less than 10 percent chance of having a baby through in vitro fertilization.

All the doctors told me there was no cure for endometriosis. I concluded the only thing I could do was to manage it on my own. I read everything I could about endometriosis and learned that diet played a huge factor with endometriosis -- sugar, chocolate, refined flours fueled bloating and pain. Estrogen stimulates the growth, so I explored things that lowered estrogen. I looked for food that contained phytoestrogens -- leafy vegetables. I stopped drinking coffee and switched to green tea. I also started doing yoga five to six times a week, working closely with yoga teachers and using inversions to keep my hormones balanced. I started seeing an acupuncturist and would get acupuncture done every week. I stopped running, as another practitioner told me that too much heat in the body caused internal inflammation. I took herbs, but they didn't seem to help so I looked into vitamins and other supplements, such as evening primrose. I learned that those green leafy vegetables helped control bloating and cramps, and brownies made me feel 10 times worse. I started getting colonics, the irrigation of the colon, and even tried to be a vegan. I also practiced positive thinking.

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I spent several years trying to manage the disease and had a system that worked fairly well, allowing me to live as well as possible with the condition. But after all those years of anguish, there was one event that eliminated the menstrual pain, bloating, and heavy blood flow: pregnancy. I never felt better.

My body loved being pregnant. Friends -- even strangers -- would stop to talk to me about the baby, commenting on my radiant glow, how great I looked, how happy I seemed.

After I gave birth to my daughter, I was pumping milk and breastfeeding, wondering when my dreaded period would make an appearance. It returned after six weeks, but it was different. I didn’t have cramps or the usual pain. Each month post-pregnancy, I anticipated the pain -- and it never came. It had vanished. Today, although some other issues have arisen, my period has been virtually pain-free.

 


Image via iStock.com/Martin Dimitrov 

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