"I remember vividly my first period at the age of 12. The pain was horrible. From the beginning, I assumed everyone felt the same, and I just couldn't handle it as well. This picture of myself, combined with the constant pain and the depression from living in pain, affected everything I did as a teenager. I learned to live with it quietly because any complaints were fluffed off as whining." Virginia was not diagnosed until the age of 25.
"I was thirteen when I first started to get my period. I would get atrociously sick (nausea, vomiting, diarrhea, etc.), though I had no idea why. I don't even remember knowing very much about menstrual cramps! I became depressed and anorexic/bulimic, and didn't have my period again until I was twenty years old.
"Now I take an antidepressant to control the eating disorder and depression. I'm one of those medical miracles -- the antidepressant was magic when seven years of therapy couldn't cure me.
"Shortly after resuming menstruation, the severe cramps started again. The cramps come with no warning. My cycle is irregular, so I can't wait them out at home. 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 currently 28 and was diagnosed a year and a half ago.
According to Neils J. Lauersen, M.D., Ph.D., the complaints of pelvic pain are very real characteristics of endometriosis which should not 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."
In The Endometriosis Answer Book, Dr. Lauersen quoted Dr. Donald Chatman, an obstetrician and gynecologist at the Michael Reese Hospital and Medical Center in Chicago, who specializes in treating women with pelvic pain. Dr Chatman, too, is 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 underdiagnosed. 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. A lot more research needs to be done to help them."
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."
Endometrial tissue is normally found lining the interior of the uterus. Each month it is sloughed off and menstruation begins. Endometriosis occurs when the endometrial tissue migrates and becomes located outside the uterine cavity. The endometrial cells attach to other pelvic organs, not only growing but proliferating. With each menstrual cycle, more adhesions form, causing blockage or contortion of other pelvic organs, such as the bowel, the ovaries, and the fallopian tubes. Normal organ function is impaired or blocked completely. Pain, infertility and associated disorders develop.
The cause of this migration of endometrial tissue has not 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, on the Atlanta Reproductive Health Center Web Site, stated, "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. "You don't have to have pain to have the disease. 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 have to add my doctor is very good at some things, but did not do a great job at explaining this disease to me. I needed to research most of it on my own.
"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 has not 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.
"Back home ( Mombasa, East Africa), my doctor lacked the expertise to handle a case like mine. He did a laparoscopy which showed my ovary, uterus and bladder had stuck together due to adhesions and residue. He told me that he could not separate them, and I did not have endometriosis. He also said my chances of conceiving were normal! This was not true. I requested a letter explaining my case when I migrated to Montreal. In his letter, he stated clearly there were traces of endometriosis in my laparoscopy." Salim is presently struggling with infertility.
Leigh, who is 28, was repeatedly told she had a cyst which 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?'
"I don't think anyone there ever really listened to what I was saying or asked the right questions. My endo symptoms are pretty prototypical, and I feel that someone should have diagnosed my disease earlier. It might not have helped medically, but it would have made me feel that I wasn't such a hypochondriac."
Myrna saw at least seven different doctors before receiving a professional diagnosis. "I lost two jobs because of this. I passed out at work and fell down the stairs. I tried to talk to their doctor about the pain in my pelvic area, but she wouldn't listen. She said, 'You didn't come in for that.'
"My internist sent me to the hospital to have my appendix removed. The surgeon refused, saying he wasn't sure what it was. I stayed three days and finally left because the pain went away. They did not diagnose the problem despite all the tests.
"The pain kept coming back. One gynecologist was examining me when he pressed really hard on my ovaries. I cried out and made him stop. He started telling me to grow up; the pain couldn't be that bad. I ran out of there in hysterics, sobbing so hard I couldn't drive. The nurses kept trying to get me to go back, but I couldn't . He wouldn't have said that to a man. (The male equivilant to the ovaries are the testicles.)
"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?" Myrna has had symptoms from 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 appendix was bound down to the ovary and the right pelvic side-wall. There was endo on the right ureter. 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. I have a very low opinion of medical personal. I think they label women as hypochondriacs and don't take their symptoms seriously." 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."
Cheri and her husband earn a decent living, yet the high cost of medical care prevents them from getting ahead or affording hobbies and vacations. "No one seems to care enough to eliminate this disease, cure it, something, anything, so that our suffering ends. Instead, we face mounting medical bills every year and fighting with insurance companies so that I can have a laparoscopy or a laparotomy. They feel it is for fertility reasons, never considering the established fact that endo causes pain, pain and more pain.
"I've lost trust in medical personnel. I find in many instances I know more about the disease than the doctor treating me. They get angry and feel intimidated about my knowledge. Instead of being angry and intimidated, they should be glad I am willing to work as a partner in my health care and that I save them valuable time."
This struggle with the medical establishment causes women afflicted with this disease to suffer emotionally as well as physically. The toll on their personal lives is devastating, affecting not only themselves, but their relationships with others. According to Susan Lark, M.D., the quality of life declines significantly for the millions of women who suffer from endometriosis. In addition to infertility "...these women have recurrent painful and unpleasant symptoms that jeopardize their ability to work, care for children, enjoy personal relationships, and even engage in sexual intercourse during a period of several days to several weeks each month."
Ellen works at home where she can take breaks or lie down. She admits to a time when she, too, didn't understand how hard it is for women on the job. "Like many women with endo, I've learned to be a good actress. No one knows the intensity of my pain except my husband. It's very hard for anyone to understand. There's no way to explain...I remember years ago laughing about a woman who used to take several days off from work each month because of her 'cramps.' Looking back, I'm sure she had endo and was in extreme pain. But we all thought she was a whiner and a wimp. Now I realize how she felt, and I feel terrible about the things we said.
"Because I know that kind of perception is out there, I never mention my disease or my pain to anyone other than my husband, my parents, or the women on WITSENDO (an online support group). I want people to think of me as an independent, self-reliant, strong, capable person -- not a wimp. So I grin and bear it as best I can."
She 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. The women on WITSENDO (an online support group) talk about this issue a lot. There are some things we can do to make it more tolerable, but it will never be like it used to be. For me, that's really, really sad." 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 house work. Sometimes they make certain comments, and I realize that 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 currently work even part-time.
Salim was not diagnosed until she moved to Canada. "Since this illness is unknown in third world countries, the treatment and diagnosis is late. If I had been here, I would have had children by now. I would have not hurt my family by becoming irrational. I had reached a stage when I thought that everyone was conspiring against me, including my husband, who is extremely understanding. I thought my marriage would breakup (due to her reactions to a misprescribed drug).
"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 does not 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.
"My endo diagnosis came at the age of 25 during surgery for a tubal pregnancy, my second lost pregnancy. After the diagnosis I felt vindicated. I'm not a wimp! In fact, I probably handle pain better than most people. Then the hard reality of losing another pregnancy and living the rest of my life with an incurable, painful and progressive disease sank in.
"Drug induced menopause and constant attempts at pregnancy followed my diagnosis. Finally, about two years ago, the pain and depression became debilitating; I chose to go on continuous birth control pills, the only method of pain control that seems to work for me. When the pills stop working, I'll look into a hysterectomy.
"For the first time since I started working at 15, I can hold down a job for as long as I choose. I take Karate and have even done some rock climbing, something I could never have done before. I am not ruled by the constant pain or the mental duress of living in constant pain, but this freedom has had a very high price. Sex with my husband is still painful sometimes, he tries to be understanding, but it does cause conflict. For me, this and the miscarriages are the greatest tragedies of this disease." Virginia has just turned 30.
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."
This realization, coupled with her diagnosis, changed the way she handles life. "I have a summer job I try not to care about. I remember to tell my parents how much I love them; I didn't say it enough before. I try not to fight with my mother; she doesn't deserve to hear it. I email my dad when I'm supposed to be working; his messages make me laugh during the day. I apologize to my boyfriend when I've been nasty and try to forgive myself for it, too. Then I pet my kittens again.
"We all only have one life. I've realized that it's very important for me to live each day as well as possible, and to live despite and 'around' this disease. I want to remember that I am a whole person, and not just a sick person." Leigh does her own gardening because pesticides may be linked to endo.
Dr. Lark, in her book Fibroid Tumors and Endometriosis, 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 guess what I would have wanted to know is that this disease affects as many as 15 percent of women during their reproductive years, and renders 30 - 50 percent infertile. I would have liked to at least KNOW about this disease. If I hadn't had a wonderful doctor that did an immediate fertility workup on me when I mentioned trying for several months, who knows what have happened. 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.
Leigh, too, regrets she did not have clearer communication with her doctors. "The doctor who diagnosed my endo is a good surgeon and kind, but he is very 'hyper' and always in a terrible rush. When I finally requested my records, I saw that he had not told me everything in them and that he had dictated some things into my records that weren't true. I don't have confidence in him now and can't go back to him.
"I have another doctor in Chicago, but he yelled at me when he found out I'd seen him and then opted to have surgery elsewhere. I made the best decision I could at the time, and, for various reasons, felt the only option was to try surgery. But then the Chicago doctor kept telling me I'd made a mistake, that he couldn't treat me. He made me break down in this terrible fit of crying, right in the office in front of my boyfriend. I was so humiliated.
"I will continue to see the doctor in Chicago, because he is good and did diagnose my back problems, but now I'm afraid to tell him things (e.g., that I'm trying the allergy treatments, which he doesn't do). I'm afraid he'll yell at me and refuse to treat me, and I don't have any other options for a gynecologist right now." Leigh started an endo support group in East Illinois.
Ellen is also 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 bought a book about endometriosis and found the name of the Endometriosis Association 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.
"I really started learning when I got online, involved in WITSENDO. If you've got a question, someone on the list will have an answer. If you have some off-the-wall symptom, someone else will also have it. As a result of my involvement in WITSENDO, I've become an assertive 'consumer' of medical care. We all support each other and encourage one another to stand up for our rights. In all honesty, most of the women on WITSENDO know more about this disease and their treatment options than most doctors." Ellen recommends The Endometriosis Sourcebook as the most complete reference she had found.
The resources listed at the end of this article were compiled through the suggestions of the women who were quoted. Each of them volunteered to tell their story in the hope other women will be able to learn about the disease, become aware of the significance of symptoms they may already experience, and to find good medical care before the disease progresses too far. They would also like to see women lobby their government representatives for more research, more training for doctors, better health care, and wider access to available information concerning all aspects of women's health issues
Artwork: Blue Rose designed by Terrie Mollohan. (76 k)
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