“How much do you really know about endometriosis?”
So reads the title of my first-person informative article on life with endometriosis, published this month in H Magazine. The free magazine is published monthly and is distributed to public racks, doctors’ offices, hospitals and other medical institutions across Florida’s First Coast. I had massive anxiety about it and I think made my editor believe I had a rotten time with it, but in the end, all the positivity has been worth it, because that means people are reading, sharing and knowing they are not alone. That makes it all worthwhile.
Below is a copy-and-paste version of the article. You can also read it here through the month of September. If you like it, e-mail Editor in Chief Joy Batteh-Freiha and let her know (and definitely forward me a copy of your thoughts to firstname.lastname@example.org)!
Thanks, everyone — hope you are all feeling well today!
How much do you really know about … endometriosis
By CHANEL MARTIN
At age 16, I knew I had it. I was lying on the floor of my parents’ living room drifting in and out of consciousness. I had gone from a quiet day alone to intense pelvic cramps and heavy bleeding. I remember calling my doctor before being too overcome to stand and hearing the receptionist insisting I respond. When I couldn’t, she sent an ambulance and I soon found myself in the emergency room with IVs in both arms.
My father was the first to arrive at the hospital and I had the joy of telling an ER nurse about the horrific abdominal pain that had turned me into a shivering, bloody wreck by the time I called for help. The male intake worker at the hospital claimed I must be having a miscarriage because “no period pain could be that bad.” My mother arrived later and held my hand as I endured a miserable first pelvic exam from an unsure male medical student.
In one day, I went from thinking there was something wrong with my severe cycles to knowing it. From there, life quickly became a world of constant pain, prescriptions, fear and shame — the real beginning of my life with endometriosis.
My grandmother had it, as did my mother, who at age 20 had a radical hysterectomy because of her pain. I knew I was likely to inherit the disease and it did not disappoint. I was officially diagnosed at age 19 and joined the 10 million women in North America reported by Juneau Biosciences surviving day-to-day with this painful infertility disease.
Defining the problem
Endometriosis, or endo, occurs when the tissue lining the inside of the uterus (the endometrium) grows outside of the uterus. Common areas include in or around the fallopian tubes, the ovaries, uterus, bladder, colon, intestines, wrapped around pelvic nerves and ligaments, and any other pelvic or abdominal organs. In rare cases, it has been found in the lungs, thigh and brain, among other places. At present, there is no cure for this chronic disease.
The most common symptoms include pain before, during and after a menstrual cycle, pain during intercourse, very heavy periods, bleeding between cycles, fatigue, back pain, bladder and/or bowel pain, other gastrointestinal disorders, and infertility.
Endometriosis is typically a hereditary condition. The National Institute of Child Health and Human Development estimates that upwards of 10 percent of women of reproductive age are affected and, with 30 to 40 percent of infertile women suffering from endometriosis, it is the leading cause of infertility. While the statistics are alarming, many women suffer needlessly because of an unwillingness to discuss problems pertaining to discomfort in the uterus or with menses and other issues.
A major source of endo pain is due to the disease’s behavior. The displaced endometrial tissue creates growths and lesions on the outside of the uterus and other organs and responds to the normal cycle of hormones that create a menstrual period. Normally, the uterine lining is shed during menses and flows out of the body. Endomteriosis spots bleed like normal tissue, but the shedding is released into the pelvic cavity and reabsorbed slowly. This internal bleeding irritates scar tissue, and blood shed by the lesions can cause painful inflammation in the pelvis and abdomen.
With symptoms so prevalent, how could endo be missed?
For some women, their only symptom is difficulty conceiving — something you don’t know until you’re trying to get pregnant. According to practitioners, the severity of the disease does not correlate with the level of pain or symptoms — a woman riddled with adhesions may not have any issues, while a girl with only a few spots may have debilitating pain.
According to the Endometriosis Association, diagnosis is considered uncertain until a laparoscopy is performed and your doctor actually sees the endometriosis. Despite my symptoms and a family history of endo, no doctor could say they were treating me for it until my first laparoscopy confirmed it.
During laparoscopy, surgeons use a laser to remove spots of endo. But for almost half of the women who have surgery, their symptoms return within a year.
More than once, a health care provider has suggested that treatment comes in three forms: a hysterectomy, a baby, or learning to deal with the pain for life. While a hysterectomy can be a fair solution because the lack of ovaries means hormone interruption and no more estrogen to feed the adhesions, some adhesions may be left behind, meaning some degree of ongoing pain.
For those who choose to have a baby, it has been documented that symptoms are less severe during pregnancy, although the relief is rarely permanent. The ‘deal with it” approach largely depends on birth control to prevent cycles, prescription narcotics to handle pain and a battery of hormone control methods to try to make life more bearable.
The fire of hope for a cure still burns in those suffering from endo. Research is being conducted to improve therapies and get to the genetic root of the disease. Several sources and organizations such as the Endometriosis Association and Endometriosis.org provide information and links to local support networks.
Every March, endo ‘survivors” and their supporters wear yellow as a sign of solidarity and to bring attention to the need for more research and awareness of a sometimes crippling disease.
Endometriosis is part of my daily life. I’ve learned to listen to my body and try to rest as much as I can. Pain meds of varying strengths — with and without codeine — are always with me, and I am not often far from a heating pad. I try not to ask for help, but when the pain radiates into your legs and back so that you can hardly walk, let alone drive to buy groceries, it can’t be avoided. I still go to dinner, charity events and swing and salsa dancing with friends as much as possible in order to enjoy something like the life of a normal 20-something.
The embarrassment of explaining why I feel so lousy, the anger over missed time with friends and family, and the moral question of whether to have children and potentially pass on the disease are with me each day. But instead of staying ashamed, I try to take my accomplishments as testaments of my strength. Through it all, I continue to work, fight, medicate and advocate. This life is still my own. I have endometriosis, but it does not have me.
Chanel Martin is a copy editor, wire editor and page designer for The Florida Times-Union.
Want to know more?
Chanel Martin recently started Endo Sucks!, an endometriosis support network in Jacksonville. For more information, e-mail email@example.com or join Endo Sucks! on Facebook and MySpace.