by Liz Hamill Scott

Acupuncture, one of the measures Scott tried to ease her pain.

In March of 2003, ironically right in the midst of Endometriosis Awareness Month, I started to feel the mysterious pain deep in my belly. I shrugged it off at first — probably it was just a bad-period-pain month. But March slid into April and the pain kept getting worse. In May I was diagnosed with an infection and given antibiotics, which seemed to help for a little while.

That August I collapsed at work.

Walking from my desk to the cafeteria and back had caused so much pain that my legs gave way under me and I grayed out. My boss found me outside of her cubicle, curled into a ball and unable to get up or walk on my own.

After that humiliating and sobering little escapade, I went on partial disability and worked from home part-time. I spent endless hours in clinics and hospitals, undergoing blood tests, urine tests, x-rays, ultrasounds, a CT scan, a colonoscopy and a shiny new pelvic exam at least once each week.

Finally, in November I underwent an exploratory laparoscopic surgery and got the diagnosis no one wants: endometriosis.

Endometriosis (end-oh-mee-tree-oh-sis) is an under-reported and hard-to-pronounce condition that affects millions of women, causing infertility, mild to severe chronic pain, and even organ damage. Endometrium — the tissue that lines a woman’s uterus — grows outside of the uterus, creating lesions on organs. The lesions follow the menstrual cycle: growing, bleeding and growing again.

For some women, like me, the lesions irritate nerves, creating crippling chronic pain. Other women’s lesions grow into their ovaries and fallopian tubes, hindering fertility and creating heartbreak. In the endo community, women joke that endometriosis is not a death sentence — it is a “life sentence.” Endometriosis is not fatal, but no one knows what causes the disease, there is no cure, and treatments often fail to relieve symptoms.

I began the most typical treatment offered to women with endometriosis — hormonal birth control. Over the years I’ve been on the pill, the patch, and the ring. Like about half of endo patients, birth control gave little relief from my pain. Kicking it up a notch, my gynecologist put me into “chemical menopause” using a drug that halts the menstrual cycle. My pain did not abate, the hot flashes grew monstrous, and my fingernails flaked off. My docs removed me from the drug and, the gynecological options nearly exhausted, referred me to a pain management clinic. The pain managers tried all sorts of things, from off-label prescriptions for antidepressants to steroid injections into my back.

In the meantime, I returned to work — entirely from home. Unlike many luckless victims of this disease, I work as a writer and editor, which permitted me to do my work while sitting on a couch with my feet up, my back propped with pillows to keep the bulk of my body weight off my inflamed and aching pelvic organs.

Liz Scott.

Because the Bay Area is rich in alternative medical options, I began making appointments with different kinds of practitioners. Acupuncture took the edge off the pain, but my wimpy white-girl skin never did get comfortable with needles being pushed into it. The Chinese herbal teas I was given did little more than make my kitchen smell awful. Western-style herbal supplements worked a little bit better — at least they took the edge off the side effects of the drugs I took daily, in ever-increasing variety and quantity. Guided meditation helped me push off the pain temporarily, too.

Many women with endo find that switching to a dairy-free diet helps diminish their symptoms. While it didn’t help me — my intake of milk, butter, cheese and sour cream helps keep the California dairy industry in business — I did find that eating a healthier diet rich in organic vegetables and fruits eased my pain just a little bit.

What helped me more was physical therapy. A combination of stretching, gentle exercise, and specialized massage releases the knots in muscles that clamped down around inflamed lesions. Although physical therapy can’t cure endometriosis, it can diminish the pain that plagues patients.

Another piece of the puzzle fell into place when my physical therapist referred me to a psychologist. I didn’t warm to the idea at first. I was in pain, physically sick with a debilitating incurable disease — why did I need therapy? It turned out that psychotherapy can help with the depression that often comes from dealing with a debilitating, incurable disease. Camaraderie helps, too — I was offered access to traditional support groups, but as a dedicated ’Net geek I found friends with endo on LiveJournal, Facebook, and Yahoo Groups.

The stories of my sisters in endometriosis sound bleak, but we have not been beaten. Top Chef star host Padma Lakshmi announced her first pregnancy in late summer of 2009 — doubly wonderful news for her as   she disclosed her struggle with endometriosis-based infertility. Her willingness to tell the press about her condition gave us all hope. The more awareness we raise, the more studies will be done to determine the cause and ultimately the cure for endometriosis. Then those of us with “life sentences” might get a chance at early parole and better lives.

Pain from endometriosis has been dismissed for generations as “drama” by women experiencing normal menstrual cramps. Normal menstrual pain is mild to moderate, and almost always goes away with a small dose of an over-the-counter pain reliever. Normal menstrual pain does not lead to nausea, vomiting, dizziness or fainting.

If you, your wife, your daughter, or a friend have this abnormal kind of menstrual pain, or pelvic pain at another time of the month, make an appointment with your gynecologist for a thorough exam.