My Struggle With Endometriosis

AS TOLD BY DEBORAH ANDREOPOULOS

RIGHT from the beginning, I need to say that I am not the sort of woman who is constantly concerned about her health. I do not get disturbed over minor aches here and there. I try to take life as it is. Some days are good; others are bad.

However, during my teenage years, I began struggling with severe pain. During the difficult days of my menstrual period, I often had biting pain in my ovaries as well as headaches, diarrhea, dizziness, nausea, and lower back pain. Sometimes I would suffer from more than one of these symptoms at a time. I noticed then that exercise and rest helped, but it was hard to find the time.

Pain is a personal thing. You cannot measure it, and you cannot always describe it to others convincingly. Sometimes I would spend whole days in bed, exhausted from the symptoms mentioned above, or I would force myself to get up and follow a more active routine, drugged with painkillers. My ability to work and carry on a normal life was hampered. I was extremely disappointed. I had the feeling that something was not right. But when I had my routine medical checkups, the reassuring words of doctors chased that thought away.

The symptoms worsened as I passed the age of 30. Burning aches came and went for no apparent reason. Severe pain woke me up in the middle of the night. At one point, I slept only a few hours during a whole week. Moreover, I occasionally had a moderate fever for a number of days. I ended up using painkillers for various aches, spasmolytic pills for my bowels, pills for my stomach, and ointments and pills for my back.

A Master of Mimicry

The symptoms tormenting me could be attributed to a number of well-known illnesses. My condition was putting on the appearance of migraine, pelvic adhesions, dysmenorrhea (menstrual cramps), irritable bowel syndrome, colitis, and gastritis. I kept blaming much of the aching on dysmenorrhea, but at the time I did not know that the intensity of dysmenorrhea pain is totally different from what I was experiencing.

I was told that it was common to have difficult periods and pain and that heredity, lack of regular exercise, long hours working at a desk, hormonal problems, fatigue, and stress as well as having passed the age of 30 without giving birth could be factors. One doctor even told me that all my symptoms were a sign of good health!

 But what about the other disturbing symptoms? My exhaustion was attributed to hard work and stress. My fever was attributed to fatigue. My bowel pains and stomach disturbances were attributed to stress and bad diet. A problem in the spine and bad posture were blamed for my back pain. So everything seemed to have an explanation. Yet, the fact remained that I was feeling really terrible.

At Last, a Proper Diagnosis

I had an ultrasound in April of 1998, but the results indicated that my ovaries were clean. During the following four months, my health deteriorated further. I decided to visit a doctor. He ordered an ultrasound again and found something very large outside my uterus. Then he sent me to a gynecologist. The gynecologist confirmed that I had either a very large cyst or a formation of cysts next to my uterus, measuring 4.1 inches by 4.6 inches [10 by 12 cm]—as big as if I were four months pregnant! And then he suspected that the cause of my problems was endometriosis.

At first I was perplexed. I knew very little about endometriosis. I had so many questions. What causes it? How would this affect my life? The next feeling that came over me was relief. For many years I had felt as if I were trapped in a tunnel of pain. When after repeated medical exams no soothing therapy or satisfying explanation was provided, I really felt helpless and depressed, and I ended up accusing myself of overreacting to normal, everyday pain. I told myself that the intensity  of the pain was only in my imagination. Now, however, all the puzzling symptoms had an explanation.

Causes, and Treatment Options

The doctor suggested that I have surgery within the next few days—the cyst or cysts could burst at any moment. Before proceeding, however, my husband and I decided to examine this diagnosis and learn as much as we could about the stranger called endometriosis.

We learned that according to some estimates, up to 30 percent of women of reproductive age may have endometriosis! The cause of endometriosis is not known. One theory is that during menstruation some of the menstrual tissue backs up through the Fallopian tubes, implants itself in the  abdomen, and grows there. Another suggests that the endometrial tissue is distributed from the uterus to other parts of the body through the lymphatic system or the bloodstream. A genetic theory suggests that endometriosis may be carried in the genes of certain families or that certain women may have factors predisposing them to it. Others blame toxins and dioxins in our polluted environment.

We were told that every case of endometriosis is different. The location of the implants, the depth to which they penetrate the tissue, and their overall size contribute to the unique nature of the disease. We learned that even the tiniest implant can cause incapacitating pain if it irritates a nearby nerve.

Some doctors believe that a hysterectomy along with removal of the ovaries is the ultimate and definitive solution. Short of that, however, hormones can be used to stop ovulation for as long as possible. This can sometimes force endometriosis into remission during the time of treatment and sometimes for months or years afterward. Conservative surgery, either major or through the laparoscope, involving removal or destruction of the growths is also recommended in some cases, and this can relieve symptoms.

Surgery and Recurrence

This last option seemed to be the most appropriate for my case. After the cysts were surgically removed, I was surprised when my doctor told me that the operation would not correct all my health problems. He said that hope and acceptance would be needed for me to continue to live life as fully as possible despite future setbacks. He assured me that he would be available to help me at any time.

The doctor said that I should have an ultrasound examination of my ovaries every three months and that I should be prepared to take medication from time to time, depending on my condition. He recommended that I immediately start treatment with gonadotropin-releasing hormone. This basically stopped the release of hormones that stimulate ovarian function and put me into a pseudo menopause.  This drug can be taken for only six months because it could cause a loss in bone density or other changes associated with menopause.

About one and a half months after the completion of the treatment, I felt prickling pain again. I had read about recurrence rates and had tried to prepare myself for the next attack of endometriosis. But I did not expect it to come so soon. The ultrasound showed that I now had a large cyst on my left ovary. I immediately took the recommended medication for a week, and the pain lessened. After some months this cyst was gone. A year later, though, another cyst appeared. At any rate, for the rest of my life, I will have to be on the alert and under a doctor’s care.

Since endometriosis is a hormonal and immune system disease, there are other things besides medication that help my body find its balance. I have had to adjust my diet by including more fresh vegetables and plenty of fruits as well as vitamins and reducing my caffeine intake. I exercise more, and I devote more time to rest. All of this has helped me to reduce the side effects of the medication and make my body stronger.

During this ordeal, I have cherished the compassionate support and loving understanding of my husband. Additionally, my coworkers—all volunteers at the Greece branch of the Watch Tower Society—have been supportive, and this has warmed my heart. Above all, I have drawn strength from my personal relationship with Jehovah, the one who ‘has sustained me upon a divan of illness.’—Psalm 41:3.

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Communicate!

Disease and pain may cause stress in any relationship. Yet, at the same time, they also offer opportunities for growth. When the disease seems unending, the behavior of the afflicted person may be noticeably different. This can present challenges for family members, particularly spouses. Instead of giving up, spouses should try to develop and use their communication skills—being slow to accuse and quick to forgive.

A woman suffering from endometriosis should remember that the entire menstrual cycle is foreign to a man’s experience and that her condition may be totally confusing to him. However, if her husband is involved in the entire process of evaluating the problem, he can reach a higher level of understanding. Here are a few tips for the patient.

▪ Your husband cannot read your mind; tell him how and where you hurt

▪ Choose a doctor who will educate both you and your husband about endometriosis and who will take extra time if needed

▪ Tell your husband about changes in the way you feel—including positive changes!

▪ Ask him to read about the condition

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What Is Endometriosis?

Endometriosis takes its name from the endometrium—the layer of cells lining the uterus (womb). Endometriosis is a condition in which tissue similar to the endometrium appears at various locations outside the uterus. The disease may be found in nearby organs such as the ovaries, the bladder, and the intestine, and in some cases it may be present throughout the pelvic region.

Although endometriosis involves an abnormal growth of tissue, it is usually not cancerous. What makes endometriosis an abnormality is not the tissue itself but its location outside the uterus. Inside the uterus, endometrial tissue helps nourish a developing fetus during pregnancy. In nonpregnant women, it is expelled during menstruation.

However, endometrial tissue outside the uterus has no way of leaving the body. The result is internal bleeding, degeneration of the blood and tissue shed from the implants, inflammation of the surrounding areas, and formation of scar tissue. Some other complications, depending on the location of the implants, can be the formation of adhesions, intestinal bleeding or obstruction, interference with bladder function, and rupture of implants, which can spread the disease. Symptoms may worsen with time, though cycles of remission and recurrence are the pattern in some cases.

[Diagrams]

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Fallopian tubes

Ovaries

Uterus

Endometrium (cells lining the uterus wall)

Each month, endometrial implants break down and bleed but have no way of being expelled from the body

Endometrial implants

Adhesions on the ovaries

Endometrial implants

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“SOME WEIRD FEMALE DISEASE”?

To find out more about the mental and emotional effects of endometriosis, Awake! spoke with Mary Lou Ballweg, president of the Endometriosis Association, in Milwaukee, Wisconsin. Here is an excerpt from that interview.

Q: What emotional effects does endometriosis have on women?

A: A lot depends on what the disease is doing at any particular time. When they are teenagers, it can be quite devastating emotionally. Girls cannot really comprehend what is going on, particularly because their condition is usually not diagnosed at that time. They are also very sensitive about these issues. They do not want to talk to their parents about them or to anybody else. So these youngsters may come to believe that they are not as strong or as good as other people. Often they have difficulty keeping up with schoolwork, and their social life suffers. We know of many girls who have dropped out of school. Every single week we hear from at least one girl who is not making it in school because of severe health problems related to endometriosis.

Q: What about married women and older women?

A: Pain may cause havoc in a marriage, particularly if the woman’s condition is not diagnosed. Once it is diagnosed, husband and wife can work together because they know what is going on. Then together, hopefully, they can find ways to counteract the effects of the disease. But when a woman’s condition is not diagnosed correctly, it is really devastating. We have one woman on our staff here whose doctor told her—in front of her husband—that the symptoms were all in her head. The husband believed the doctor, and now they are divorced. This lack of understanding is a major challenge. If you go home and tell your family that you have some chronic disease, such as multiple sclerosis, you are likely going to get some sympathy and support. But if you go home and tell them that you have endometriosis—well, what is that? To them it is some weird female disease that nobody even wants to talk about. You may not get any support at all.

Q: What kind of support do you think husbands, children, and parents can give to a woman who has endometriosis?

A: First of all, I think they need to believe the woman and believe what is happening to her. They should try to offer the support that they would offer if any other kind of health problem came along. A big part of it is to learn everything they can about the disease. Once you know more about the disease, you can understand its effects and you can also understand the side effects of some of the drugs. Moreover, I think that most of our societies worldwide have created a taboo—they are embarrassed to talk about female biology. This is really sad. So I think that the biggest challenge we face worldwide is probably changing people’s attitudes about just what it means to be female.

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Mary Lou Ballweg