That familiar pain was back. It was sharp, and it radiated throughout my abdomen. Initially, I'd brushed it off as something I ate, but after a few months I noticed a pattern—the pain seemed to flare up only when I was having my period. Over-the-counter medications helped, and I did my best to ignore the discomfort. But then I also began to experience a constant ache in the area of my right ovary. I'd recently suffered a miscarriage that had required surgery, so I wasn't eager to go back to the doctor. However, the fear of ignoring something terrible, such as ovarian cancer, prompted me to make an appointment with my gynecologist.
My physician listened carefully as I described my symptoms, then performed an internal examination. "I don't feel anything unusual," he told me, "but I think we should schedule a laparoscopy." He explained I would be placed under a general anesthetic, then he would make a tiny incision near my belly button. He would insert a tube with a light on the end to see if he could find the reason for my symptoms.
Surgery seemed a little drastic to me. My physician had said he wasn't concerned about cancer, and didn't every woman have menstrual cramps? Maybe mine are just a little worse than everyone else's, I thought, or maybe I just have a low pain tolerance. Thinking I was overreacting, I almost canceled the procedure. But a friend convinced me to go through with it.
My gynecologist's findings shocked me: I had extensive endometriosis. He showed me a picture of my insides, pointing out the brown and yellow spots that covered my ovaries and uterus. He explained that he'd tried to burn off as many of the spots as he could with a laser, but that the pain most likely would return.
At that time I didn't know anything about endometriosis. I vaguely remembered a friend who had it, but she was in her early 20s and her gynecologist had told her she'd probably never get pregnant. I was 32 and had three kids. How could I possibly have the same condition? I wondered.
I've since learned a great deal about this disease that physicians say has reached epidemic proportions.
What is endometriosis?
Endometriosis used to be called the "career women's disease," because at one time it was thought to affect only childless working women in their 30s and 40s. Today, more than five million women and girls of all ages in North America have been diagnosed with endometriosis. Despite its prevalence, the disease often is misunderstood and misdiagnosed by physicians and patients alike.
Endometriosis derives its name from the endometrium, the tissue that lines the uterus. Each month, this tissue normally builds up, then sheds during a woman's menstrual cycle. In women who have endometriosis, endometrial tissue (or tissue like it) grows outside the uterus in the form of lesions, implants, nodules, and cysts. These become inflamed and painful because, unlike endometrial tissue inside the uterus, this misplaced tissue has no way of leaving the body.
Most often these growths are found on the ovaries, fallopian tubes, and in the lining of the pelvic cavity, but also can be found on the bladder and intestines, and occasionally even in areas outside the abdomen. Endometriosis can cause scar tissue, adhesions, and intestinal obstructions because it grows and spreads, compressing and sometimes even invading surrounding organs.
Many endometriosis sufferers tell of nightmarish experiences including missed workdays, unsympathetic bosses, irritated husbands, strained marriages, and the devastating pain of infertility.
The symptoms & risks
Perhaps most disturbing is the number of women who are told by medical practitioners and family members their pain is imaginary. In Living with Endometriosis, author Kate Weinstein says 70 percent of the women she interviewed for her book were told by someone in the medical profession that there was no physical cause for their pain. Of her 20-year struggle with endometriosis, one woman I know, Angie, says, "Being dismissed by doctors and having my horrible pain minimized were almost worse than the disease."
It's difficult to say who's at risk for developing endometriosis. There may be a genetic connection—mothers and daughters of endometriosis sufferers are probably more likely to develop the disease. A study published by The Journal of the American Medical Association found that women with shorter menstrual cycles (less than 27 days) and longer menstrual flow (one week or longer) are more likely to develop endometriosis than those with longer cycles and shorter periods.
Since I'd had abdominal pain associated with my periods, my doctor suspected endometriosis almost immediately. However, symptoms can vary greatly from woman to woman, making it a very difficult disease to diagnose.
Symptoms can include pain with bowel movements (which indicates the presence of growths on the colon or intestines), painful intercourse, intestinal problems, abnormally heavy bleeding, fatigue, and lower-back pain. Endometriosis sufferers often describe their pelvic pain as "sharp, burning, or knifelike," and while pain is often worse during menstrual periods, it can occur all month long.
Infertility is one of the most heartbreaking symptoms. While not all women with endometriosis are infertile, an estimated 30 to 40 percent of sufferers have difficulty getting pregnant. According to the Endometriosis Association, it's believed the possibility of infertility may increase the longer a woman waits to get pregnant. Also, some research indicates that those who do get pregnant are more likely to have difficulty in labor and delivery and to experience ectopic pregnancies and miscarriage.
Since the symptoms of endometriosis can mimic other diseases such as appendicitis, ovarian cysts, and bowel and colon diseases, it's best not to assume one has endometriosis until a definitive diagnosis has been made. This can only be done through laparoscopy, a procedure that's usually done as outpatient surgery with a general anesthetic. The abdomen is distended with carbon dioxide gas, then the physician inserts a slender tube with a light on it (called a laparoscope) through a small incision in the abdomen. This allows him to look around the abdomen and evaluate the severity of endometrial growths.
Even after laparoscopy, some doctors miss the presence of endometriosis, so it's important to find a physician who specializes in the disease.
Treating the elusive disease
Perhaps one reason endometriosis has failed to garner the attention it deserves is because it hasn't been perceived as serious or life-threatening. However, in a study of 20,686 Swedish women with endometriosis, researcher Louise Brinton of the National Cancer Institute found that endometriosis sufferers appeared to have a higher risk for developing breast cancer, ovarian cancer, and non-Hodgkin's lymphoma. Researchers at the Brigham and Women's Hospital in Boston have found a potential link between melanoma (a dangerous form of skin cancer) and endometriosis, and a recent study at the University of Pittsburgh confirmed that women with endometriosis may be more likely to develop ovarian cancer.
Unfortunately, endometriosis is as difficult to cure as it is to diagnose. After my surgery, my symptoms subsided for several months, and I got pregnant with our fourth child. My doctor told me I could expect to be pain-free for up to two years after my daughter was born, but after that, the symptoms were likely to recur.
I felt OK for about 18 months; then the pain slowly returned. It began plaguing me for weeks at a time, and eventually I only felt good for about one week out of every month. The rest of the month I'd experience severe abdominal pain and headaches (which were likely due to hormone fluctuations).
In addition, I was experiencing PMS-type symptoms such as anxiety and depression about a week before my period. I grew increasingly frustrated. Practically every woman I knew had to deal with PMS from time to time—what was wrong with me, that I couldn't cope with the pain? I often would pray for relief, then become discouraged when the symptoms wouldn't go away. I began to wonder if this was a spiritual problem. I reasoned that if I prayed harder or was more faithful in my quiet times, maybe then I would feel better.
With the encouragement of my husband, I finally made another appointment with my gynecologist, who reminded me this was indeed a physical problem. He said he thought it was time I had a hysterectomy. I resisted his suggestion. As a Christian, wasn't I supposed to persevere through my trials, not try to avoid them? I wrestled with my decision and prayed for wisdom.
God gently revealed to me that he was providing an answer through the care and counsel of my doctor. After all, if I'd had a disease such as cancer, I wouldn't have questioned the need for surgery. I released my fear to God, and found comfort in verses such as Psalm 73:26, "My flesh and my heart may fail, but God is the strength of my heart and my portion forever," and Psalm 54:4, "Surely God is my help; the Lord is the one who sustains me." I realized whether or not I had surgery, God still would be the one who would ultimately sustain me.
I later found out a total hysterectomy (which includes removal of the uterus, ovaries, and fallopian tubes) is considered the only "cure" for endometriosis, but because of the need for hormone replacement therapy, the disease can recur in some women, even after surgery.
For women who wish to get pregnant, or who simply aren't ready to have a hysterectomy, there are other options to help manage the symptoms of endometriosis. However, because of the complicated issues surrounding the disease, there isn't a one-size-fits-all treatment. Traditionally, endometriosis has been treated with laser surgery or medication, or a combination of the two. Some medications may suppress the disease, including hormone therapies such as birth control pills, and danazol, a drug that induces temporary menopause.
One new treatment is called laparoscopic excision or LAPEX. This procedure is done as outpatient surgery, but instead of being burned with a laser, the endometriosis is surgically excised.
Diet and exercise can make a difference. Regular aerobic exercise may help decrease pain, in part due to conditioning of muscles in the pelvic area. Exercise helped considerably when my symptoms were at their worst. A low-fat, high-fiber diet also can help lower estrogen levels. Some patients find relief from using alternative treatments such as acupuncture, herbs, nutritional supplements, and stress-reduction techniques.
It's been almost a year since my hysterectomy, and I'm no longer burdened by pain. The most important thing I've learned is that painful periods aren't normal and shouldn't be ignored. Don't keep on suffering the debilitating symptoms of this disease—help is available!
Joanna Bloss, a writer and a mother of four, lives in Kansas.
Aside from surgery or hormone drug therapy, alternative methods of treating endometriosis have been introduced in recent years.
In Endometriosis: A Key to Healing through Nutrition (Thorsons), author Dian Shepperson Mills explains how some endometriosis sufferers have experienced relief through diet changes. For example, some patients have eliminated certain foods from their diet such as wheat, refined sugars, dairy products, and caffeine, while increasing their intake of other foods and supplements including nuts, vegetables, berries, fish, fish oil, and evening primrose oil.
Larry and Belinda Wurn, founders of Clear Passage Therapies, have developed a treatment that combines massage and physical therapy. The treatment aims to break apart the painful internal adhesions caused by endometriosis through site-specific stretching and pressure techniques similar to massage movements. Larry says the couple began developing the method 13 years ago after Belinda was diagnosed with cervical cancer and underwent surgery and radiation. The surgery caused adhesions, which resulted in pelvic pain. The type of therapy the couple created to help Belinda now is the basis of Clear Passage's patented treatment plan, which about 200 women receive annually in Florida. Larry says 85 percent of his patients experience a significant decrease in their endometriosis-related pain after completing the therapy.
The intensive, weeklong treatment plan is expensive— $4,200 for 20 hours of therapy. The Wurns say most patients' insurance plans help cover the cost. Additional Clear Passage centers are opening this year in New York, California, and Washington, D.C. For more information, visit www.clearpas sage.com or call (352) 336-1433.
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