Hi, I'm Crystal. I'm 25, I'm a dental assistant in Little Rock, Arkansas, and I'm getting married next June to the most patient man in the state of Arkansas. I also have endometriosis.
For ten years, every doctor I saw told me my period pain was normal. It wasn't. If you're a woman who has been told the same thing, and something in you says "this is not normal," this page is for you. Listen to that something.
Important: I'm not a doctor or a nurse. I work in a dental office, and I'm good at suction and terrible at waiting. Everything here is from my own experience and my own reading, and every woman is different. Please talk to your own doctor about your own body.
I got my first period at fourteen, and from the very beginning it was bad. Not "I'd rather stay home" bad. Lying on the bathroom floor, throwing up, can't stand up straight bad. I missed a day or two of school every month. The school nurse kept a heating pad in her desk drawer with my name on it.
Here are some things I was told, by grown-ups I trusted, between the ages of fourteen and twenty-four:
- "Some girls just have bad cramps."
- "It's normal."
- "You'll grow out of it."
- "It'll get better after you have a baby." (I was sixteen.)
- "You just have a low pain tolerance."
- "Have you thought about whether you're under a lot of stress?"
I was put on birth control pills at seventeen, and they helped a little. I lived on ibuprofen. By my early twenties the pain wasn't just during my period anymore. Some months it hurt for half the month. In 1997 I ended up in the emergency room on a Saturday night, sure it was my appendix. It wasn't my appendix, so they sent me home.
The thing that changed everything was a conversation at work. Jackie, one of the hygienists at our office, found me sitting in the sterilization room with my head on my knees, and she asked me what was wrong, and I told her. She said, "That's not normal. You need to see my doctor." Her doctor was Dr. Schindler. She was the first doctor who sat down, looked at me, and let me talk for as long as I needed to. Then she asked a lot of questions. Then she said she thought I might have endometriosis, and that the only way to know for sure was a laparoscopy.
I had it in May 1998. It's outpatient surgery: they put you to sleep and look inside with a little camera through a couple of tiny cuts. I went home the same afternoon with some Band-Aids and orders to take it easy. When I woke up, Dr. Schindler told me she'd found endometriosis, and removed what she could.
I cried in the recovery room, and my mom thought I was upset. I wasn't. I was relieved. It was real. It had a name. I wasn't a wimp and I wasn't crazy and I wasn't making it up.
And then, I'll be honest, I got mad. I'm still a little mad. Ten years. Ten years of missed school and missed work and missed parties and people rolling their eyes. I try not to stay mad, because it doesn't help, but I think a little anger is fair, and I've put it to work on this page.
The lining of the uterus is called the endometrium. Every month it builds up and then sheds, and that's your period. With endometriosis, tissue like that lining grows in places outside the uterus where it doesn't belong: on the ovaries, the tubes, the outside of the uterus, and other places in the pelvis. It still responds to your monthly hormone cycle, but it has nowhere to go. That can cause inflammation, pain, and scar tissue.
Common symptoms (you don't have to have all of them, and some women have none):
- Very painful periods, often getting worse over the years
- Pelvic pain at other times of the month
- Heavy periods
- Sometimes, trouble getting pregnant
Some other things I learned:
- It can only be confirmed by laparoscopy. Your doctor can suspect it from your history and an exam, but to know for sure, someone has to look.
- It's often missed for years. Mostly because painful periods get written off as normal. Ten years, in my case, and I've met women for whom it was longer.
- The amount of pain doesn't always match the amount of endometriosis. Some women with a little have a lot of pain, and the other way around.
- Nobody knows for sure what causes it. It's not something you did.
There isn't one treatment that's right for everybody. These are the main kinds, in general terms. Talk to your doctor about which ones make sense for you.
| Treatment | What it does |
| Pain relievers | Anti-inflammatory pain relievers, like ibuprofen or naproxen, help with the pain for many women. They don't treat the endometriosis itself. |
| Birth control pills | Can make periods lighter and less painful, and slow things down. |
| Lupron and other hormone treatments | Lupron and drugs like it shut down your body's estrogen for a while, which can shrink the endometriosis. The side effects are like menopause, such as hot flashes, so it's usually used for a limited time. There are other hormone treatments too, like danazol. Each one has its own pros and cons. |
| Surgery | Laparoscopy can remove or destroy the endometriosis the doctor can see. In severe cases, some women who are finished having children choose a hysterectomy, and even that isn't always the end of it. This is a big decision for you and your doctor. |
What I did: after my laparoscopy, Dr. Schindler put me on Lupron for six months. I spent July 1998 in Arkansas having hot flashes, which I don't recommend. I stood in front of the open freezer at work so often that the dentist put a chair in front of it. After that I went back on birth control pills, the way Dr. Schindler prescribed them for me, and I take a pain reliever when I need it. It's not a cure. But I have most of my life back. Last year I missed eleven days of work. This year so far I've missed one.
What helps me, besides the medicine:
- A heating pad. I own three: one at home, one at work, and one in my overnight bag. My fiancé, Mickey, bought me the nicest one for my birthday, which is maybe the most romantic thing anybody's ever done for me. Don't laugh. A warm bath works too.
- Planning around my cycle. I keep a calendar. I don't schedule big things on my worst days when I can help it. Yes, I picked my wedding date with my calendar in my hand. Please don't tell Mickey's mother.
- A pain diary. This is the most useful thing I've done for myself. It's how I finally walked into Dr. Schindler's office with something more than "it hurts a lot." Here's mine, explained.
- Gentle exercise. Walking, mostly. On a bad day, just around the block.
- Telling people. My boss knows. Mickey knows everything. My mom, Paula, has been with me through all of it, and she's told me she's sorry she believed the doctors instead of me. I told her she couldn't have known. My little sister Amie went to the doctor last year with bad cramps of her own and took my pain diary with her, so it doesn't take her ten years. Endometriosis can run in families. If you have it, tell your sisters and your daughters.
- Being kind to myself. Some days are just bad days. I rest, and I don't apologize for it anymore.
About babies: Mickey and I want children someday. Dr. Schindler has told me that endometriosis can make it harder for some women to get pregnant, and that a lot of women with it get pregnant just fine. We'll cross that bridge when we come to it, together, and with a doctor we trust. If you're in the middle of that bridge right now, my heart is with you.
The Endometriosis Association was founded in Milwaukee in 1980 by women who had it and were tired of not being believed. They have information for women and their families, a newsletter, and support groups. After my surgery I wrote to them and they sent me a big packet, and I read every page of it at the kitchen table, and for the first time I felt like I wasn't the only one.
And talk to your doctor. If your doctor won't listen, find one who will. That's not being difficult. That's taking care of yourself.
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