The Endometriosis Coping Zone

An Enigma Called Endometriosis

Contributed by Roberta Speyer

Imagine having mysterious pains that affect every aspect of your life. Now imagine that every doctor you ever consulted told you it was all in your head.

"I went from doctor to doctor looking for an answer to my debilitating pain. They told me there was nothing wrong, that I didn't have a high pain tolerance, that I should learn to live with it." - Cindy 

Now suppose this excruciating pain has something to do with the taboo subjects of hormones and menstruation. Would others listen to you and empathise? 

"I was told that every woman has discomfort, even though my 'discomfort' would put me in bed for three days each month. No one took my suffering seriously." - Susan 

Many women today are suffering from an illness that few people know about and which has few treatment options. But because their pain is often dismissed as "a woman's problem," they often don't comprehend the seriousness of their symptoms. 

"I just ignored the pain because, after all, it was 'just my period.'"
- Deborah 

These women feel isolated and alone because what they experience on a monthly basis is radically different from everyone else's experiences. They feel scared, bewildered, and misunderstood. 

"I couldn't understand why my periods seemed to be so much worse than other women I talked to." - Jennifer 

It's nearly impossible to explain the pain they feel. It's much more than cramps, much more than PMS. And it often occurs every day of their lives. How could anyone else possibly understand? 

"I felt I was different, that no one understood me. All women have periods. And if they've ever had cramps, some think that's what I experience. It's frustrating trying to explain the extent of the pain."
- Susan 

Endometriosis is one of the most baffling and misdiagnosed diseases in gynaecology today. In addition to the pain it can inflict, it adds insult to injury by affecting a woman's self-esteem, her relationships, her family, and her career. 

Endometriosis plays by no rules. It may cause debilitating pain or infertility in one woman but few symptoms in another. And the extent of the disease has little to do with the degree of pain. It is truly an enigma. 

WHAT IS ENDOMETRIOSIS?
When Susan, a former teacher, first heard the word "endometriosis," she felt it was validation. After years of being dismissed, she now says, "A diagnosis has given me permission to acknowledge the depth of my disease." 

Endometriosis is named for the word "endometrium," which is the lining of the uterus. When a woman has endometriosis, endometrial stroma and glands are found outside the uterus, creating what are known as implants or lesions. Although many theories have been proposed, the cause of endometriosis remains unknown. 

Endometriosis lesions can be found anywhere in the pelvic cavity, including all the reproductive organs, bladder, bowel, intestines, and rectum. In rare cases, it has even been found in the lung, spine, arm, and brain. Depending on the location and extent of the disease, women with endometriosis can experience debilitating pain. “For me, the disease is devastatingly painful," reveals Cindy, a long-time sufferer. "With every moment that passes, I am aware of its existence." 

SYMPTOMS
Symptoms associated with endometriosis include pelvic pain, severe menstrual cramps, painful intercourse, infertility, heavy or irregular bleeding, painful bowel problems, lower back pain which may radiate down the legs, bladder pain, and fatigue. 

However, not all women with endometriosis experience every symptom. The symptoms often depends on the location of the lesions. For example, endometriosis involving the area behind the uterus may cause painful intercourse, while endometriosis involving the bowel may cause painful bowel movements. Even more baffling is the fact that some women with severe endometriosis have no symptoms at all. There is no correlation between the amount of disease and the amount of pain. 

DIAGNOSIS
Many myths and misconceptions about endometriosis exist, even in medical literature. Women are told they can't have endometriosis because they've had children, because they're still teenagers, or because they don't fit someone's "profile" of a typical patient. The truth is, endometriosis strikes women of all ages, all ethnic backgrounds, all personality types. 

My history is fairly typical. Over the years, various doctors diagnosed my recurrent pains as spastic colon, irritable bowel syndrome, and stress. I wasn’t diagnosed with endometriosis until, at age 34, it interfered with my ability to have children. 

To correctly diagnose the problem, most women have a laparoscopy (a type of surgery that uses a specialised fibre-optic instrument that's inserted through a small incision near the belly button). Using this instrument, the surgeon can see the lesions and remove them. 

TREATMENTS
Treatments that are traditionally prescribed include birth control pills, suppressive drugs that stop menstruation, or surgery. However, birth control pills and suppressive drugs don't cure endometriosis, nor does pregnancy. Surgical removal of endometrial lesions may provide longer-lasting pain relief for some women. However, even hysterectomy does not guarantee that a woman will be free of the disease. Only two months after Deborah had her hysterectomy, the endometriosis pain returned in full force. She recalls, "When I wasn't getting any better, I was horribly depressed. But I kept looking for answers." 

COPING AND SUPPORT
How do most women with endometriosis cope with their disease? According to Jennifer, "You have to take it day by day. Prayer, meditation, and relaxation techniques help." Talking with other women who have endometriosis is also vitally important. Deborah points out, "Nobody talks about endometriosis. That's why support groups have really helped. We often say that we cry when we find each other because it's so nice to find out you're not alone." Jennifer feels the same way. "Knowing you aren't the only one dealing with pain is very empowering." 

When women have endometriosis, they often feel very isolated. That's why being part of a support group can make a big difference. From Cindy's point of view, "Talking with other women strengthens me during the rough times. When you're down, someone is always there to lift your spirits right back up." 

Coping with endometriosis is also easier when patients have current and accurate information. For many women, management of this disease may be a long-term process. Therefore, educating yourself about the disease and taking the time to find a good doctor are two of the best ways to cope.

TABOO NO LONGER
As attitudes change and society becomes more open, endometriosis will eventually become better known. That will help all of us. Research is currently underway that may provide clues to early detection, causes, and an eventual cure. Until there are answers, women with endometriosis can rely on one another to learn how to manage this serious disease. 

© 2010, Roberta Speyer

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