In Her Own Words: Living with Endometriosis

Lindsay, a 25-year-old data analyst, suffered with abdominal pain for years before being diagnosed with endometriosis. Here, she describes how a supportive network of friends and family help her to cope with the discomfort she still experiences even after several years of treatment.

What was your first sign that something was wrong? What symptoms did you experience?

My first symptom was pelvic pain. I'd had emergency surgery to remove a large ovarian cyst and thought that the pain I'd been experiencing was related to that, but it didn't subside after the cyst was taken care of.

What was the diagnosis experience like?

It was long, although my understanding now is that the eight months it took to get a diagnosis is short compared to the nine years it takes some women. It was incredibly frustrating, though, and I saw six doctors before I found one who was able to identify what I had. Until then, I had doctors who assumed I had pelvic inflammatory disease and put me on antibiotics, doctors who blamed it on sexual promiscuity (at a time when I didn't even have a boyfriend), doctors who prescribed treatments that would have been appropriate for stomach pains and heartburn, and doctors who put me on massive doses of ibuprofen. Inevitably, each of them would ask, "Have you seen a psychiatrist yet?" and that's the point at which I would leave and look for another doctor.

Eventually I found a doctor who took me seriously. She recommended exploratory surgery, during which she found what she called "gunpowder lesions" on my ovaries and recognized the problem as endometriosis.

What was your initial and then long-term reaction to the diagnosis?

My first reaction was, "I'm not crazy - there's really something wrong here!" My next response was to learn as much as I possibly could about the disease and its treatment.

How is endometriosis treated?

I had oblation surgery to treat some of the lesions they found on my ovaries soon after I was diagnosed; in fact, I've had four surgeries in all now. The most recent one of which has given me some relief. I've been on a variety of medications. Taking care of myself, getting enough rest; it all makes a difference in how I feel.

Did you have to make any lifestyle or dietary changes in response to endometriosis?

I found that caffeine seems to be linked to flare ups of pain. And if I'm going out at night with friends, I take my own car so I can come home and rest when I need to. I was a vegetarian even before I was diagnosed, and I'm convinced that my low-fat diet has kept my endometriosis from being even worse than it is.

Did you seek any type of emotional support?

It was hard at first to find other "endo" sufferers who wanted to share their experiences; some women haven't wanted to acknowledge that they have endometriosis. I finally found an online support group connected with the Endometriosis Research Center's website, and it was like a light coming on for me. So many of my friends just didn't understand - when I was on disability leave because of it, they'd say, "Why can't you work? You look fine to me!" or "She acts like she's the only one who gets cramps." The other women who had endometriosis really understood what I was going through.

My boyfriend has been wonderfully supportive, though it has been rough for him at times, especially when I wasn't working and didn't want to go out much. He really missed our being able to be with other people.

Does endometriosis have an impact on your family?

There's a lot of autoimmune disease in my family, and endometriosis is linked to these. I really try not to worry my family with this too much. I don't want them to worry - they do anyway, of course, because they really do care.

What advice would you give to anyone living with endometriosis?

Keep a pain journal. I've found this to be very important both in managing my own illness - I was able to see, for instance, a link between my caffeine consumption and pain - and in helping doctors to see patterns that can guide treatment. People, doctors and friends alike also take you more seriously when you're able to demonstrate exactly what you're experiencing and when you felt it. I made a chart based on a 28-day cycle and kept track of things I ate or drank that might be potential triggers, when I had discomfort and what seemed to make me feel better.

And seek out the support of other women with endometriosis. No one can really understand until they've been through it themselves.

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.