From Pain to Wisdom: What I Learned From My Endometriosis
Taken from the May/June 2008 issue of the Women's Health Activist Newsletter.
I was suffering from what I now know to be the early stages of endometriosis. Yet, whenever I went to the school nurse or our family’s HMO, my health care providers assumed I just had regular menstrual cramps and should stop whining about it. At the most, I’d be prescribed hormonal birth control, but normally I was told to take over-the-counter pain medicine and continue on my way. This went on for years and, by my sophomore year of college, the excruciating monthly pain was a familiar occurrence for me.
That summer, I went to stay with my oldest sister, Bess, and her husband at a lake house in Canada. The last thing I wanted was for our relaxing week to be interrupted by my monthly menstrual drama. Unfortunately, by the end of the week, my period had started and with it came the usual cramping. I tried to cover up the extent of my pain, not wanting to ruin the positive vibes we’d been cultivating all week. I hid in bathroom, lying on the floor for hours in my regular cramp routine of crying, vomiting, and trying to breathe. This was hard to conceal in our tiny, one-bathroom cabin, and my sister noticed quickly.
I told her not to worry: this was normal for me. She was horrified that I’d gone so long without receiving proper treatment. Part of me just wanted to be left alone, but, at the same time, I trusted her and knew she’d also experienced painful cramping when she was younger. I was scared and embarrassed, but told her my history. She immediately recognized the symptoms as signs of endometriosis: extremely painful (or disabling) menstrual cramps that worsen over time, heavy periods, chronic pelvic pain, and lower back and intestinal pain.1 Bess knew that my pain was real, having suffered from endometriosis herself. In fact, she says that the pain from her worst cramps were of the same magnitude as those from her burst gallbladder, which required prolonged hospitalization and major surgery.
On the car ride home, Bess bundled me up in the back seat and buckled down for a long discussion about endometriosis and women’s health. She was disheartened that, a decade after her struggle with endometriosis, her younger sister encountered all of the same obstacles. I had one priceless tool she hadn’t, however: a reliable, female role model who knew what I was going through. Bess told me she had tried the gamut of pain treatments, from over-the-counter medicines to heavy duty prescriptions, from none-at-all to way-too-many. She experimented with hormonal therapies, including the Pill, Depo Provera, and IUDs. She’s found a way to keep her symptoms under control and is trying to get pregnant, something she previously considered to be impossible. Together, we wove my own story into hers, creating a narrative about the ultimate importance of listening to one’s own body and being confident, despite any barriers that one faces in our ineffective health care system that doesn’t take women’s concerns seriously. I left our talk with a new perspective on the importance of taking charge of my body and health.
After talking with Bess, I was inspired to find my own research on endometriosis. I now know that it is one of the most common gynecological diseases, affecting more than 5.5 million women in the U.S.1 The condition has no certain cause or cure. Opioids are commonly prescribed because of their effective pain relieving properties, including morphine, codeine, and oxycodone. Taken exactly as prescribed, opioids can manage pain effectively, but they can also produce drowsiness, constipation, long-term dependency, and, depending upon the amount taken, can depress breathing.1
I also dove into literature about hormone therapy options. Oral contraceptives containing estrogen and progestin regulate the growth of uterine tissue and can relieve endometriosis-related pain so long as the woman takes the pills. Side effects include weight gain, bleeding between periods, and bloating. Progesterone and progestin, available as daily pills or quarterly shots, improve symptoms by reducing or stopping a woman’s period, but can cause depression, weight gain, and bone loss. Danocrine stops the release of hormones involved in the menstrual cycle and can relieve symptoms, but is associated with oily skin, acne, weight gain, muscle cramps, fatigue, breast changes and tenderness, headaches, dizziness, weakness, hot flashes, and a deepened voice. Gonadatropin-Releasing Hormone (GnRH) agonists block production of certain hormones and prevent menstruation; they are available as a daily nose spray, or a monthly or quarterly injection. This sends the body into a “menopausal” state; side effects can include hot flashes, tiredness, insomnia , headaches, depression, bone loss, and vaginal dryness.1
Surgical techniques to address endometriosis include laparoscopy, laparotomy, and hysterectomy. With laparoscopy (the “gold standard” for diagnosing endometriosis), a surgeon makes a small, abdominal incision to search for endometrial growths which can then be removed.2 Laparotomy is more invasive than the laparoscopy and is performed through a 4—12” abdominal incision.2 Hysterectomy, the removal of the uterus, can relieve pain but may increase the risk of heart attack among women in their 40s and causes instantaneous menopause. Hysterectomy has also been associated with frequent urination, incontinence, fistula, urinary tract infections, decrease in sexual sensations, lack of lubrication, depression, psychological stress, and hormone deficiencies.3
I discovered I also have an entire arsenal of alternative therapies. A low fat, high fiber vegetarian diet can help, as can avoiding non-organic foods, dairy, caffeine, refined sugar, and alcohol (dairy products’ high fat content soaks up environmental contaminants associated with endometriosis). To reduce symptoms, choline (a B vitamin) and methionine (an amino acid) enhance liver function and help deactivate estrogen. Vitamin E and omega-3 fatty acids help treat inflammation and cramps. Aerobic exercise benefits women with endometriosis by strengthening the pelvic area’s muscles. None of these approaches have been studied as well as the medical/surgical treatments, but are worth trying because they are safe and can be used as self-help remedies to manage symptoms.4
A month after my vacation, I met with my doctor again, feeling more confident than ever and unwilling to have my concerns dismissed. With more firmness than before, I told him that I was experiencing signs of endometriosis and wanted to discuss treatment. I am now trying new options and waiting to see if I will find long-term relief. Whether or not I find a “cure,” I at least know I’ve taken my health into my own hands. Whatever a doctor recommends at this point, I plan on researching and discussing it with other sources before blindly taking advice as I used to.
I love hearing from other women who have discovered the empowerment that comes from playing an active role in their own health and wellness. That contributed to my interest in applying as an intern at the NWHN. At the Network, I’ve heard countless stories, like my own, from women who have felt disrespected by their doctors or just want a better understanding of their options before making any decisions. I think the image of two sisters sharing health information and encouraging each other to always learn more about their own bodies is a great image for the women’s health movement. I see that same image reflected in Cindy Pearson, Susan Wood, and other NWHN leaders: women who have been fighting for decades for a woman’s right to reliable health information and care. I feel proud to be part of an organization that is committed to helping women make informed decisions about their health.
For more information on endometriosis, I recommend the Endometriosis Association, a patient-run information, advocacy, and research organization. They have a great website and have published two books: Overcoming Endometriosis and The Endometriosis Sourcebook.
Marian Sadler is a senior at the University of North Carolina at Asheville, graduating in May 2009 with BAs in Psychology and Spanish. She was a NWHN intern during Spring 2008. Marian plans to pursue a graduate degree in public health and would like to dedicate her career to improving health care for all.
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1. National Institute of Child Health and Human Development, “Endometriosis,” NICHD Information Resource Center, NIH Pub. No. 02-2413, September, 2002, pp. 1-12.
2. Endometriosis Research Center, “Laparoscopy,” Delray Beach FL: Endometriosis Research Cener, 2001, pp 1-2.
3. National Women’s Health Network (NWHN), “Hysterectomy,” Washington, DC: NWHN, 2005. Accessed March 15, 2008 from http://188.8.131.52/healthinfo/detail.cfm?info_id=8&topic=Fact%20Sheets
4. Ackerson, A, “Easing the Pain of Endometriosis,” Better Nutrition 2001; Summer, pp. 8, 10.