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Menstrual Pain: Medical Mystery or Malpractice?
 Woman II by Pujalte |
"I was thirteen when I first started to get my period. I would get atrociously sick-nausea and vomiting--though I had no idea why. I don't even remember knowing very much about menstrual cramps. I became depressed and [developed an] anorexic/bulimic [syndrome]. I didn't have my period again until I was twenty. Shortly after resuming menstruation, the severe cramps started again.
"The cramps come with no warning. Because of the severity, I've ended up in hospital emergency rooms three times. Once I got an attack while I was driving over a bridge on Interstate 95. I got over the bridge, drove off the highway into the grass, opened the door, threw up and passed out. A man cutting the grass on a large tractor must have called the hospital for me. I had another ultrasound test and was told to take some aspirin. Yup, good old aspirin. No doctor ever mentioned to me that I might have endometriosis. I've probably had it for a very long time." Leigh is twenty-eight and was diagnosed two years ago.
According to Neils J. Lauersen, M.D., Ph.D., author of The Endometriosis Answer Book,these complaints of pelvic pain are characteristics of endometriosis, commonly called "endo," which shouldn't be casually dismissed. "It doesn't seem possible to have a progressive, chronic condition and not be aware of it, but with endometriosis this can happen. A sufferer may consult an unsympathetic doctor or a practitioner inexperienced in diagnosing or treating the disease. For her pain, she may be dismissed-told that her symptoms are all in her head or that they are blown out of proportion."
Dr. Donald Chatman, an obstetrician and gynecologist at the Michael Reese Hospital and Medical Center in Chicago, specializes in treating women with pelvic pain. Dr Chatman is also concerned that a problem exists in medical circles when it comes to understanding this disease. "There is no question that endometriosis is often misdiagnosed or under-diagnosed. Primarily, I think physicians are not aware of the potential presence of the disease...I think doctors are not paying enough attention to the fact that a significant number of women are disabled by pain associated with the disease."
Women with symptoms like those of Virginia and Leigh cannot take comfort in studies cited by Dr. Lauersen, "Misdiagnosis is predictable when physicians don't have the heightened awareness needed to make the correct diagnosis. In fact, a study was done on pelvic inflammatory disease (PID), a sexually transmitted disorder in which it was found that the error rate of diagnosis was 35 to 50 percent. Many of those women actually had endometriosis, not PID."
 Mlle. Chanel by Marie Laurencin |
The cause of this migration of endometrial tissue hasn't been determined, although there are several theories currently under investigation. A reversal of menstrual flow which causes the cells to migrate out of the uterus through the fallopian tubes, the spread of endometrial cells through lymph nodes and blood circulation, impaired immune functions, stress, and heredity are all being considered. Dr. Mark Perloe, of the Atlanta Reproductive Health Center, emphasized how many women suffer. "Endometriosis affects 5 million U.S. women, approximately 6-7% of all females, 30-40% of whom are infertile. Studies have shown that sisters have a six times increased risk compared to their husband's sisters. Other studies show up to an eight times increased risk when compared to other women. Although these studies suggest a genetic basis, presently, the mode of inheritance is unknown."
Pain in the pelvic area is one of the primary symptoms, but some women never experience significant pain. The lack of pain can let the disease spread unchecked until other problems are the catalyst for consulting a physician.
Cynthia consented to a laparoscopy, an exploratory procedure, to assist in fertility problems. "Upon waking from surgery, I was told of the endo; this was a complete surprise to me. I had heard the word 'endometriosis' but had no idea what it meant. The doctor, who had already left, was no initial help to me or my husband. We just knew this was a big problem as far as fertility was concerned. I guess the thing that surprises me the most is how it affects each person differently. I now understand some of the pains I've felt over the years, during ovulation, during my period, etc. Though it hasn't affected me in the same degree as others, here I am, with stage IV endo."
Because of the progressive nature of the disease, early diagnosis and treatment is essential. When women are encouraged to ignore the pain and other symptoms, the consequences can be enormous. When the delay in diagnosis is because of unsympathetic doctors, the tragedy is even worse. The trust between doctor and patient is irrevocably broken.
Leigh, who is 28, was repeatedly told she had a cyst that would heal. "I was in the student health center all the time before my endo was finally diagnosed. One time I just cried and said, 'How can someone have all these infections and feel like this all of the time?'
 Woman I by Pujalte |
"It was my psychiatrist who finally mentioned this disease. The fact he recognized it raises questions in my mind. How closely linked to endo is my depression? Why was he better informed than my gynecologists?" Julia' symptoms began in early teens but wasn't diagnosed until her late 20s.
Mary's doctor first gave a diagnosis of 'stress'. Later, during surgery to remove an ovarian cyst, her endo was discovered. "My doctor said that I must have been having awful pain for a long time. I had tried to tell him this. I believe if my doctor had taken my pain more seriously, the endo wouldn't have gotten so out of control. I wish I would have demanded that the cause be found." Mary has had four more surgeries.
According to Dr. Lauersen, these cases are typical. Early symptoms of the disease are not detected "...which often happens because a doctor palpitating the abdomen to find pelvic masses don't find the smaller tissue fragments clinging to the ovaries and tubes. Consequently, women with endo often wage a lonely war with the disease while their doctors try ineffective treatments, usually antibiotics; give up on them altogether; or worse, convince them that a hysterectomy, the surgical removal of the reproductive organs, is the only way to cure their suffering."
Many sufferers feel overwhelming anger toward their doctors because of the consistency of misdiagnosis. A lack of expertise is not a good explanation in their eyes. Gerry, whose endo is currently in remission, spoke the strongest, "If this were a male disease, the research dollars would be there, the procedures would be covered by insurance, and doctors who misdiagnosed the problem would be faced with malpractice suits. Women should no longer tolerate these excuses or the negative attitudes of their doctors. If a woman is in pain, she has the right to be taken seriously. It is time for women to band together and pressure the powers that be to act in our best interests."
 Black Silk Mini by Emma Stanley |
Susie speaks for many women concerning the more intimate moments of her marriage. Endo is absolutely evil when it comes to sex. I've cried many times after sex because it hurt so much. In my mind, sex equals pain. When I talk with doctors about this problem, they seem unconcerned. But for me, it's a major quality-of-life issue. I want to be intimate with my husband, but the pain often makes it difficult or impossible." Ellen is planning her life one day at a time. Mary and her husband have grown closer in some respects but farther apart in others. "He tends to shoulder more burdens by himself now, rather than sharing his concerns. He isn't the only person in Mary's life who is carrying extra burdens. "I felt so strong before this started. I took care of my kids and my home and I worked. Now I feel so useless. My kids do most of the housework. Sometimes they make certain comments, and I realize they don't remember me ever doing much for them. It's like I've always been sick."
"Right now I have pain as bad as I've ever had it. I can't have surgery because I can't afford it. I don't have insurance and we already have over $ 40 thousand in medical bills. The general opinion is I'm probably full of adhesions. My one doctor won't do surgery because he doesn't think it will help; I have to wonder if the money is a factor. There is a doctor who would operate, but they need too much money down. I just don't have it." Mary cannot work even part-time. "My first reaction was disbelief when my doctor told me I would never have children. How could I be deprived of something like this? Everyone has children. It's natural. Then came the phase of 'I must be very sinful'. That phase is still there; it never leaves.
"I can afford only one cycle of In Vitro Fertilization (IVF). Will it work? Will I conceive and then miscarry? I even went through the phase of wanting to remove my uterus. Why should I keep my uterus when it doesn't serve any purpose?" Salim feels the emotional roller coaster of infertility is the worst aspect of this disease.
Virginia has ceased active efforts to conceive. "Choosing between trying to have children or living a functional life has been a torturous decision to make, but we invested a lot of time and emotion in a biological child only to be disappointed again and again. We may try adoption or live child free, devoting our time, money and energy elsewhere." Virginia has just turned thirty.
Even when conception occurs, the choices are not clear-cut, as Leigh discovered. "The medication I take causes birth defects. I was smoking, in debt and not married, so I terminated a pregnancy. Maybe I would have made the same decision if I'd known I had endo; I guess I probably would have. Yet that decision will haunt me for the rest of my life. I don't ovulate now; my endo has really started to progress. My boyfriend doesn't know if he wants to marry me -- the baby I aborted may be the only one I can ever have. And I think the pregnancy made the endo worse again."
 Valentine 1924 by Marie Laurencin |
Dr. Lark empathizes the difference adequate information can make. "For many years, I have been a strong advocate of the need for health and lifestyle resources that provide women with the information, education, and resources they need for optimal health and well-being. The more access women have to information about their important health issues, the more they can participate in and promote their own well-being...Unfortunately, most women have difficulty finding information on major health issues. First, the medial and scientific community has traditionally given low priority to research on women's health issues. Few government dollars have been spent researching the major female health problems. Second, a woman faced with any significant female-related problem finds almost no published information. Very little work discusses what women can do on their own to maintain their health and well-being."
The participants in this article echoed her concerns:
"I would have liked to at least KNOW about this disease. I would suggest that people be very proactive in their fight for their own bodies. If you feel you have any problems, talk, talk, talk to your doctor. If the doctor doesn't listen, find another doctor." Cynthia may not have waited to have children if she had known. Ellen has become a strong advocate on importance of being informed. "When I first was diagnosed with endo, I relied on my doctor for information. He had these little pamphlets and diagrams; I faithfully read them and showed them to my family. I look back now and laugh at how woefully inadequate those little brochures were. It wasn't until I found the Endometriosis Association and bought The Endometriosis Sourcebook that I started really learning about this disease. I wish I'd had all this knowledge years ago. I would have made such different decisions for myself. And, most important, I wouldn't have relied on my doctor for information or to have my best interests at heart.
"Having a disease like endo makes you aware of the limitations of traditional medicine. When I had my laparatomy, I thought I would be 'cured'. Imagine my surprise when I felt worse afterwards. Most women are told surgery or drugs or pregnancy will cure endo. The truth is, there is no cure. And while a very few fortunate women may go through a medical procedure and have no further symptoms, the vast majority of us will have endo until we go through menopause or have a hysterectomy, and even that is no guarantee."
