This Is What Endometriosis Really Feels Like

(Photo Courtesy By: Kyung Jeon)

Despite it being one of the most common gynecologic diseases, a leading cause of infertility, and debilitatingly painful, endometriosis isn’t a very popular topic of conversation.

The condition, estimated to affect around 5 million American women, typically causes painful periods, an experience too many women keep mum about because we’ve been convinced even killer cramps are just a fact of life. Staying silent about endo experiences, though, only perpetuates the problem: Women who don’t know about it don’t know to discuss their symptoms with their doctors and continue to suffer in agonizing silence. (Want to pick up some healthier habits? Sign up to get daily healthy living tips delivered straight to your inbox!)

Endometriosis happens when tissue that would usually grow inside the uterus instead grows outside of it, commonly on the ovaries, bowel, bladder, and elsewhere throughout the pelvic cavity. Because it’s uterine tissue, it also bleeds monthly, but the body is unable to clear away this blood, leading to swelling, inflammation, and continued growth of the tissue, often forming cysts. There’s little we know for sure about how or why this starts, but it can begin as early as a girl’s very first period.

That was the case for actress Lena Dunham, who knew something was off from the very beginning of her menstruating life, as she wrote recently in her newsletter Lenny Letter:

“The stomachaches began quickly and were more severe than the mild-irritant cramps seemed to be for the blonde women in pink-hued Midol commercials. During the worst of it, my father brought me to the ER, where they prodded my appendix and suggested it might be food poisoning and that we should go home and wait it out. My mother placed a pillow under my lower back, and I moaned in the guest room, where no one could hear me, my legs spread like a woman in labor.”

It’s a stomach-churning account, one that triggers sickly feelings as you imagine sisters, mothers, friends, and coworkers who are trying to convince themselves each month that everything is just fine. Endometriosis pain—as you will hear from the women below—is definitely not normal. Here’s how it really feels, in their own words.

(Photo Courtesy By: Kyung Jeon)

“My symptoms started as soon as I began menstruating at age 11. The easiest way I’ve been able to personify the pain is it’s like someone is crushing your ovaries and uterus with giant hands. The pain would get more and more severe as the day would go on, radiating down to my thighs. I’d be on the couch writhing back and forth clutching a heating pad. I would be in so much pain I would have to cancel plans, stay home from school, or would end up in the nurse’s office. In high school, one of my friends accidentally ran over my foot with his car and broke it in four places. My period pain was worse than that. When pain from your period interferes with your life, when you schedule your life around your period, that’s not something we should just accept. Don’t take people telling you, ‘Oh, you’re fine,’ when you know you’re not fine. You know your body better than anyone else.”
—Tracy Lytwyn Fischer, 25, who lives in Carmel, IN, and works in communications for a nonprofit. She blogs about her experience with endometriosis at StillSunflowers.com.

Related: 5 Reasons It Hurts Down There

“We’re always talking about, 'Oh, she’s blossoming into a woman.’ I didn’t feel like I was blossoming. I felt like there were these explosions in my abdomen.”
—Padma Lakshmi, 45, food expert, model, author, and cofounder of the Endometriosis Foundation of America, in Lenny Letter

“From my very first period at 12, I would vomit and black out with pain. I had a high temperature and was extremely shaky and had to spend days in bed. I have 10- to 15-day periods, anemia, and severe cramps. It started to get even worse in my late teens and early 20s, where I would just get struck down by this horrendous pain, like someone was carving out my uterus with a knife, and all I could do was cry. In the past year, the symptoms developed into constant fatigue, headaches, IBS, cystitis, and chronic pain; I mean, not a single second without pain, down my legs, in my back, in my bottom. It turned out I had a huge endometrial cyst inside my left ovary and severe endometriosis. I feel completely alone with the disease and find myself having to pry sick notes out of my doctor’s hands because they can’t understand why I’m not 'better.’ News flash, it’s incurable. I lost my job 2 days before my first surgery; they were sick of me calling in sick. I haven’t worked since and can’t work. The pain has changed my personality. My confidence is gone, I don’t sleep, I’m weak, I’m sad, I’m constantly hunched over with my face screwed up. I long for a day to wake up and feel no pain, to look at myself in the mirror and not see a gray-faced crying woman I don’t recognize. We need help, we need support, and we need understanding.”
—A 25-year-old from the UK who asked to remain anonymous

(Photo Courtesy By: Kyung Jeon)

“It feels like someone is taking a pickax to my uterus and trying to break out.”
—Alexys Becerra, body piercer and makeup tattooist, via Prevention Facebook

“I started having painful periods in my early 20s, and I was immediately put on the birth control pill to manage those symptoms until I was about 27. Then I got off due to health concerns about heart disease in my family. About 24 menstrual cycles later, the pain started to wake me up in the middle of the night. Each month, the pain got worse and worse. I was taking more and more ibuprofen. I would shut my office door and lie down on the floor, trying to squeeze acupuncture points on my heel that I was told could help with pain management. Ibuprofen started not working; it wasn’t strong enough. I would experience a very uncomfortable pressure in my bladder in the days leading up to my period, which turned out to be because the endometriosis was growing there. I was on Vicodin in the summer of 2008, and that wasn’t helping either. I delivered my two girls without drugs, and that doesn’t not hurt! Endometriosis pain is worse than childbirth.”
—Nicole Havrilla, 40, blogs at SurvivingEndometriosis.blogspot.com and is currently working toward opening an endometriosis clinic in Dallas-Fort Worth called WholeLife Authentic Care.

Related: 8 Reasons It Hurts During Sex—And How To Fix It

“It felt like a knife was being stabbed in me.”
—Julianne Hough, 27, dancer and actress, in People magazine

“For as long as I can remember, I assumed pain was part of getting your period and that it was not unusual to feel sick. I remember missing school because I would be curled up in bed with unbearable cramps. This is the way it was for my mom and some of my aunts, so they considered my symptoms normal. Sometimes I was unable to walk due to the pain. Other times, I would get lucky and go months without pain. One Christmas Eve, I woke up with pain so unbearable I was rushed to the hospital. After several tests, the doctors still didn’t know what caused my symptoms. I had a follow-up appointment with my ob-gyn a week later, and it was then that I was diagnosed. I was 28 and had never heard of endometriosis before. Because I assumed pain with periods was normal, I had never brought it up to my doctors.”
—Christina Kim, 31, a full-time mom in Manhattan

(Photo Courtesy By: Kyung Jeon)

“One month, I couldn’t even go to work. Sometimes it would hurt so bad I didn’t want to eat. A heating pad would sometimes help, as well as pain relievers. I’d always think, If this is how periods feel, then I don’t want to know how labor feels.”
—Janemary Vongdara, via Prevention Facebook

“I always had terrible stomach issues. It was not uncommon that after eating I would have diarrhea or vomiting. I suffered with rectal bleeding with bowel movements. In my early 20s, my period cramps started becoming debilitating. I was gaining weight and had visible bloating. I went on to have severe back pain, leg pain, rib pain, and urinary frequency. My gynecologist told me I just had a low tolerance for pain. My gastroenterologist diagnosed me with irritable bowel syndrome at the age of 19, and I had my appendix removed at age 23. I also went on to have my gallbladder removed. Neither surgeon mentioned endometriosis. I had never heard of endometriosis before, even though I later found out that my mom and aunts had terrible periods and most likely had it. I’ve had two excision surgeries to remove endometriosis and scar tissue from my bowels, bladder, uterus, and diaphragm. Many people dismiss the disease because they are not educated and do not understand how serious it is. This lack of support and understanding isolates patients. People think women are playing sick or are just weak. Endometriosis patients are some of the toughest women I have ever had the privilege of knowing. Everything we accomplish—from simple everyday tasks like doing the dishes, to the bigger milestones like graduating school—takes more determination and energy than it would for many other people.”
—Casey Berna, 36, a social worker, counselor, and advocate for endometriosis and infertility patients in North Carolina

Related: 11 Things Only Someone With Endometriosis Understands

“It is not a woman’s lot to suffer. I know we’ve all been raised that way, but it is not. It is not OK to miss a part of your life because of pain and bleeding…Suffering should not define you as a woman…I’d had difficult periods, I’d been through fainting when I was in college, I started to bleed for no reason.”
—Susan Sarandon, 69, actress, in a speech at the Endometriosis Foundation of America’s 2011 Blossom Ball

(Photo Courtesy By: Kyung Jeon)

“I kept it all very private. Anything that’s related to your menstrual cycle is very taboo to talk about in our society. A lot of the emotional and psychological issues all went into my artwork; it’s influenced my work tremendously. A week before my period, I would have really, really sharp abdominal pain for at least a couple of hours. I would have to stop whatever I was doing and just lie down or crawl to a place where I could. I would wait it out in fetal position wherever I was. I was lucky that the first gynecologist I went to about this happened to know about endometriosis. He put me on birth control pills, and I threw away the last week to stop my period. I did that for 2 years, but I hated it. Emotionally, it made me really up and down, and physically the weight gain was unpleasant. I took myself off and was symptom-free for a good 7 years, except for severe digestion issues that I thought were just due to stress. Then at some point the sharp pain started happening again. I had an ultrasound, which doesn’t usually show endometriosis, and my right ovary was three times its normal size. It felt like a knife stabbing my abdomen. I had the cyst on my ovary removed, but 6 months after surgery I was back in severe pain. I was at my wit’s end and finally found an endometriosis specialist who did surgery a month later. He performed a 5-hour procedure and removed my appendix and found 25 specimens of endometriosis basically everywhere below my belly button. He told me I had a very small window if I ever wanted to have a child. My son was born on July 31. I’m breastfeeding now, so I haven’t had my period yet. I’ve heard that the endometriosis could grow back and I’ll experience the same pain as before. Or it could go away completely after having a child. Or it might come back but not as severe. So far, I haven’t had any symptoms.”
—Kyung Jeon, 40, an artist and graphic designer in New York City

By Sarah Klein