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THE EXPERIENCE OF HYSTERECTOMIZED WOMEN:
A QUALITATIVE INTERVIEW STUDY

Janice Stensrude
March, 1995

The aim of a qualitative interview study, states sociologist Robert Weiss (1994, p.2), is to rescue "events that would otherwise be lost," to end up knowing a lot about a topic. With or without supporting quantitative data, individual experiences are real and deserve to be heard. Selection of hysterectomized women as study participants was admittedly determined by a personal quest, and no doubt my intense interest in the material affects both its presentation and the results of the interviews.

Though five interviews were conducted, six points of view are represented. I have, myself, experienced 21 years of a frustrating search to understand my personal experience of having been hysterectomized and oophorectomized while still well within my childbearing years, and include my own voice here.

Weiss (1994, p. 2) described qualitative interviews as those that "sacrifice uniformity of questioning to achieve fuller development of information." That was the reason I chose this format for the present study. I am far less interested in generating additional information expressed in percentages than I am about the subjective experiences of real women whose experiences have life and meaning when fleshed out with their feelings intact.

As an exploratory project of only five interviews, this study does not purport to put forth proof of theories that will apply to a general population. Indeed, the major purpose of this study is to identify the very real experiences of a small population who have not been heard, whose experience, in effect, has been denied by mainstream society through its reliance on inadequate information from the medical and psychological communities. The women whose experiences are represented here are from among the "population of concern" as Weiss (1994, p. 14) labeled it--those who are most affected by hysterectomy, the hysterectomized women themselves.

The present group of interview respondents may best be described as a "convenience sample." I interviewed women known to me to have had the experience of hysterectomy with bilateral oophorectomy. Given the small size of the sample, what I hoped to accomplish was the identification of topics for future study and a refinement of my understanding of the method of interviewing and the types of questions addressed to respondents. Given the constraints of the study as it is here presented, valuable data have nonetheless found their way into this report.

Characteristics of Study Participants

Choosing to include my own experience as if I, too, had been interviewed, this study includes six participants. Fictitious names are used to protect the privacy of participants and ensure confidentiality.

One participant was in her reproductive years (traditionally classified as 15 to 44 years of age); one, in her seventies, was clearly of postmenopausal age; and the remaining four, in their fifties, may be classified as of menopausal age. Pertinent characteristics of these respondents are shown below in Table 1.


Table 1
Characteristics of Six Hysterectomized Women in a Qualitative Interview Study

Characteristics

SubjectsAgeYears Since SurgeryDiagnosis at SurgerySurgical Procedure

Chris547Endometrial CancerRadical hysterectomy
w/bilateral oophorectomy
Jill5722
15
Bleeding, faintingHysterectomy
Anne285Tubal pregnancyUnilateral oophorectomy
331Precancerous
cervicalcells
Hysterectomy
Gretchen533Bleeding, fibroidsHysterectomy w/bilateral
oophorectomy
Sue7421Fibroid tumorHysterectomy w/bilateral
oophorectomy
Author5421Pelvic inflammatory
disease
Hysterectomy w/bilateral
oophorectomy

Study Questions

The study was to address five questions:

1. Are women who have been deprived of a natural menopause confused about whether or not they experience menopause?

2. Have hysterectomized women with prematurely ended ovarian function lost their menopause?

3. Is there anything a woman can do to offset the undesirable symptoms that are a result of loss of the uterus and ovarian function?

4. Do women in the study group identify with menopause (or even think about it)?

5. Have the experiences of the hysterectomized women in this study been validated or denied? By whom?

Each of these questions will be addressed in turn.

Are women who have been deprived of a natural menopause confused about whether or not they experience menopause?

Each of the women in this study, as is generally true in our society, accepted the term "menopause" as descriptive of the entire process of a woman's transition from her reproductive years into her nonreproductive years. The question reflects this definition, even though, in medical terminology, "menopause" refers only to the actual cessation of bleeding, i.e., the last menstrual cycle.

In this group of six women, I was the only one who experienced a sense of confusion about menopause. Chris was advised by her doctor to expect a premature menopause as the result of her surgery, and she identified with this experience as a series of symptoms that included hot flashes, sweats, weight gain, and other typical physical symptoms of menopause.

Jill viewed menopause as a certain time in a woman's life that had more to do with her age, and the social trappings of that age, than with the condition of sexual organs. Even though her surgical menopause occurred at age 33, she identified herself as a menopausal woman (aged 57) at the time of the study. She saw menopause primarily as a time of transition and a shift in life focus.

Anne, the youngest study participant at age 33, had no thoughts of menopause at all. She had not heard of the term "surgical menopause" and did not relate to menopause in any way, except as something that is happening to her mother. This was particularly interesting in that Anne's mother, the 69-year-old mother of five (Anne is the youngest), was still having menstrual periods two to three times a year.

Gretchen recognized her surgery as being the beginning of menopause, but believed she would not have experienced a natural menopause until she was in her sixties. She was unaware that 50 was the normal age for menopause and equated later menopause with retaining youthful vitality.

Sue was 52 when she had her hysterectomy. She believed she was years away from menopause at that time because she was still experiencing monthly periods. She was unaware that the heavier flow she experienced for several years prior to her hysterectomy was a normal sign of approaching menopause.

Have hysterectomized women with prematurely ended ovarian function lost their menopause?

Of the five women interviewed, four had had or were having an experience that they identified as menopause. Anne, not yet of normal menopausal age, had no thoughts or opinions of menopause. My personal experience, after having studied the subject for six months, is that I have experienced, and continued to experience, menopause. Symptoms of menopause as related in various books and publications have been a part of my experience since surgery and continue to the present day.

Is there anything a woman can do to offset the undesirable symptoms that are a result of loss of the uterus and ovarian function?

None of the study subjects had the ultimate answer to this question for themselves or for women as a group. Jill, Anne, and Gretchen, were all using estrogen replacement therapy at the time of the interviews. Jill, who has been using estrogen for more than 20 years, is satisfied with the effect of the hormone and does not suffer from the usual physical symptoms of menopause. Anne pressed her doctor to prescribe estrogen after learning that her hysterectomized friends who took estrogen were not suffering from fatigue and loss of libido. She has been very pleased with the result. Gretchen reported that she takes "a very low dose" of estrogen and suffers multiple menopausal symptoms. She has tried a number of alternative therapies, including herbs and acupuncture, and continues to search for ways to improve her health, which has declined steadily since her surgery three years ago.

My personal experience with hormone replacement therapy was very positive for the first seven years before suffering a series of symptoms caused by estrogen buildup. After two years, during which I experienced hair loss, dry skin, fatigue, and hot flashes, I used subcutaneous estrogen (a pellet implanted in the hip) for several years. This type of therapy was successful for me, immediately improving hair and skin and restoring my energy level. Perhaps because the time-release pellet withdraws gradually from the body, I experienced no drastic symptoms when I chose to stop using it four years ago. Do women in the study group identify with menopause (or even think about it)?

The women in this study identified with menopause in ways consistent with their ages. That is, Sue, at 74, considers herself postmenopausal, which is the normal state for a woman of her age. Conversely, Anne, at 33, gives no thought to menopause--not at all unusual for a woman of her age. Chris, Jill, Gretchen, and I, all of us in our fifties, are each involved, to varying degrees, with thoughts of menopause.

Have the experiences of the hysterectomized women in this study been validated or denied? By whom?

As the interviews were completed, I realized this question both reflects and answers the frustrations underlying the other four questions. Jill was the only study participant who failed to experience frustrating conversations with doctors who insisted symptoms being experienced were either "in your head" or "unrelated to your surgery." Jill had surgery twice--the first time a hysterectomy to relieve heavy bleeding and the second time a bilateral oophorectomy when fibroids grew on her ovaries. Each of these surgeries were preceded by prolonged periods of illness and exhaustion. She viewed her surgeries as welcome relief and never experienced symptoms that she took back to her doctor for explanation. Chris's doctor had advised her that her surgery would result in premature menopause, but he had not explained to her what that would entail. When she returned to him with a list of symptoms for which she sought explanation, she was met with a simple, "That has nothing to do with your surgery." It was somewhat of a hair-splitting response. Some of the symptoms were acknowledged as a result of loss of ovarian function, but yet still "nothing to do with your surgery." The doctor was apparently willing to own the incisions and sutures, but not the excised organs. Chris received some reassuring support from HERS, a national organization that operates a national toll-free telephone line for women contemplating hysterectomy or those who, like Chris, needed information on the aftereffects of their hysterectomies. She was able to find out that her symptoms were not unique and were indeed attributable to her surgery.

Anne's doctor labeled her aftereffects psychological symptoms. She began therapy with a female therapist who confirmed the physician's opinion that her symptoms were psychologically based. Anne reported that, in her therapy, she had worked out a number of personal issues that had been concerning her, but her symptoms persisted. By insisting on estrogen therapy, she was able to alleviate all of her symptoms except loss of libido. After seeing a television program on estrogen/testosterone therapy, she was planning on looking for a physician who would work with her on experimenting with this combination as a possible resolution to the loss of her previously satisfying sex life.

Gretchen's doctor treats each of her symptoms as a separate illness, willingly prescribing some sort of drug for any complaint she brings to him. She only recently began to connect her surgery with the series of physical changes she has experienced over the last three years since her surgery. She was actively pursuing a resolution to her condition through various alternative therapies.

Sue was the only woman in the study who had healthy organs at the time of hysterectomy. During a routine checkup, her gynecologist, a young woman, advised her that she had a large fibroid. She further advised that, if the uterus was not removed, the fibroid could at any time suddenly break free, causing Sue to bleed to death before she could reach a hospital. The doctor also advised that her healthy ovaries should also be removed to prevent the possibility of ovarian cancer. Sue was sufficiently alarmed to agree to the surgery. Since she was allergic to horses, she had an immediate reaction to the prescribed Premarin (a conjugated estrogen manufactured from mare's urine) and discontinued its use. Disenchanted, she never again returned to that doctor. Through the years, she has been unable to communicate with any of her physicians, each time being given a pill for any symptom that she might mention. At one point she was hospitalized for ten days and subjected to numerous tests, with the doctor unable to alleviate her symptoms or offer a diagnosis. She questioned her medications, only to meet the ire of the physician who insisted her various medications had nothing to do with her symptoms. Upon discharge, she discontinued all medications, against the advice of her physician, and was feeling well and free of symptoms within a matter of days. She has armed herself with a medical encyclopedia, a reference book on drugs and their effects, and a newsletter circulated by a physician who advocates nutritional therapies.

My own experience was one of being stonewalled and treated like an idiot child each time I attempted to discuss symptoms or body changes with a physician. Just as Sue and Gretchen, I have determined that I am my own best healer.

The Unasked Question: Regrets

Each subject volunteered their level of satisfaction with their surgery. Chris, facing the very real prospect of death from endometrial cancer, did not describe herself as satisfied with her surgery, but felt she had made a choice between life and death; the surgery with its myriad of effects with which she continues to deal, was seen as a choice to continue living.

Jill had no regrets. She believed her two surgeries saved her life and relieved her of terrible, life-draining illness.

Though Anne had been offered the alternative of "wait and see," her doctor also advised her that he had never seen atypical cells change so rapidly to precancerous. "I don't want anything growing in me," she told me. "I want it out. Now!" Though comforted by knowing the renegade cells can no longer threaten her with cancer, she has not been too pleased with her doctor's insistence that her typical post-hysterectomy symptoms are "all in her head." Though there was, theoretically, a choice in Anne's case, she stated that she was too terrified of cancer to consider not having the surgery. She has no regrets about the surgery, preferring her post-hysterectomy aftereffects to the terror of uncertainty.

Gretchen is bitter about her surgery. "I was accustomed to being a beautiful woman," she told me, "and now I have gaps in my teeth where my teeth have become loose, my hair is thin and lifeless, my skin is dry and wrinkled." She said she would have been willing to suffer through the heavy bleeding and fatigue if she had been made aware of the possible repercussions of hysterectomy. Gretchen's healthy ovaries were also removed to prevent ovarian cancer. Her case is particularly tragic. At the time that Sue had her hysterectomy, it was generally believed that hysterectomized women were at significantly greater risk for ovarian cancer than intact women. But when Gretchen had her oophorectomy, just for that reason, that notion had been proven false at least four years prior. With no history of ovarian cancer in her family, she is at greater risk for heart disease from loss of her uterus than she would have ever been for ovarian cancer had she kept her reproductive organs.

Sue does not appear as bitter as Gretchen, but may perhaps have a greater reason to be. At the time of her hysterectomy, she was suffering no symptoms and was experiencing generally good health. The heavy periods that were the precursor of her impending menopause were of no particular concern to her and were not causing undue comfort. At 74, she considers it all somewhat "water under the bridge" and concentrates more on improving her health and maintaining her vitality than on vain regrets.

It is only within the past few weeks that I have acquired my medical records to learn the actual diagnosis at hysterectomy. The doctors had only spoken to me of out-of-control bleeding and persistent infection. The surgical record states an admitting diagnosis of pelvic inflammatory disease, a dangerous and devastating female condition. I am more sympathetic now with the doctor's choice that I never thought to question at the time, but continue to be convinced that becoming educated about one's body is the only way to be an intelligent health-care consumer.

Future Research

Women today in their fifties, as I am, have been the guinea pigs for the Pill, the IUD, estrogen therapies, and a host of other medical "miracles" that have enjoyed waxing and waning popularity. We now represent a significant population that is largely ignored. Our experiences have been used as examples of "what not to do." Little has been done to answer the question, "What now?" Clearly this is the direction needed in further research. Since medical research has virtually ignored the long-term prognosis of the hysterectomized woman, constructive information is most likely to come from the women themselves. Interview studies and women meeting in support groups to exchange information seem to hold the greatest potential for answering that question.

What has been apparent from my reading, as well as from these interviews, is that the larger problem is one of communication between doctor and patient and patient self-responsibility. Women clearly need more information about hysterectomy and their bodies in general. One of the most significant findings in my reading has been the fact that women are hormonally fancier than men. Like the computer car systems, there's just a lot more that can go wrong.

Though a number of fine books are in print, the subject deserves more press. Existing publications focus on reasons why a woman would not want a hysterectomy; none focus on solutions to the problems of women who have already had the surgery and must now make health decisions based on that reality. One third of the women over 40 years of age in the United States are without uteri. That is a significant population--a population that deserves and hungers for information.


References

Weiss, R. S. (1994). Learning from strangers: The art and method of qualitative interview studies. New York: The Free Press.

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