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AN ANALYSIS OF LETTERS WRITTEN TO
AN INFORMATION EXCHANGE NEWSLETTER
The present study seeks insight into the experiences and concerns of women who have defined themselves as "menopausal." It is proposed here that the female climacteric and menopause are poorly understood by the scientific community and the lay public. Further, it is maintained that information available to the scientific community has not been adequately disseminated to women and that this scientific silence has made the menopausal experience more traumatic for women than it needs to be. It is further proposed that there is a polite silence maintained among the general public that inhibits the exchange of information among menopausal women.
In 1976 the First International Congress on the Menopause was held in France. Menopause experts from throughout the world attended, and after deliberating, concluded that only three symptoms could be attributed to the climacteric: hot flashes, perspiration, and vaginal atrophy (van Keep, Greenblatt & Abeaux-Fernet 1976, p. 2). One physician present at the meetings maintained that only hot flashes could be linked to the climacteric. Perry and O'Hanlan (1992) implied that nothing had changed since 1976:
The scientific evidence available today supports three signs of menopause: menstrual cycle irregularities, hot flashes, and a thinning and drying of the vaginal and urinary tissues. Even these three signs, however, are not universal among women. (p. 21)
West (1994) recognized mood swings as a common occurrence after natural menopause, postulating that "ovarian hormones are a factor in the maintenance of emotional equilibrium" (p. 44). Doress-Worters and Siegal (1994) stated that "Body weight and body composition changes may occur that may be related to the hormonal changes of menopause." Sheehy (1991), writing in a popular women's magazine, was more daring. She listed nervousness and irritability, menstrual gushing, hot flushes, night sweats, insomnia, sudden bouts of waistline bloat, weight gain, heart palpitations, crying for no reason, temper outbursts, migraines, crawly skin, memory lapses, loss of sexual interest, increased appetite, and palpitations (p. 254).
An opportunity was offered to read several thousand letters written to a newsletter whose major purpose was the exchange of information among menopausal women. The purpose of this study was to measure the experiences of these women against the information offered by the scientitic community and to identify anecdotal information that supports or does not support the proposed hypotheses. The present paper offers an analysis of the first 161 letters published by A Friend Indeed, from its first issue in 1984 to the January, 1986 issue.
Only simple statistical analysis was attempted. Use of percentages and absolute numbers prevails. As will be seen in the following discussion, coefficients of correslation, probability levels, degrees of freedom, and other such statistical measures were inappropriate to the material.
Study participants were among subscribers to A Friend Indeed, a newsletter that is distributed monthly, September through June of each year. Participants are those subscribers who wrote letters to A Friend Indeed. The letters were elicited by the nature of the newsletter, i.e., its purpose was to offier a platform of information exchange among women wishing to read about the experiences of midlife women and wishing to offer their own experiences in a shared exchange of information.
Though there was one case of a daughter writing to inquire about her mother's symptoms and another case of a physician writing to comment on drug therapies, the letters are otherwise written by women who have some reason to believe they are experiencing symptoms that can be related to menopause.
The terms menopausal and menopause are used in their commonly accepted meanings, that is, the time periods immediately preceding and following menopause (cessation of menses). Though climacteric is the correct term for this period, it is not a term commonly known to the women who wrote the letters that are a part of this study.
Where age information was given, the majority of the authors of these letters, as will be shown, are between the ages of 50 and 54, the average age of the cessation of menses (Perry & O'Hanlan 1992, p. 7; van Keep, Greenblatt & Abeaux-Fernet 1976, p. 2; Doress-Worters & Siegel 1994, p. 119).
Because of the nature of the newsletter, authors of these letters expected their letters to be published and available to all subscribers of A Friend Indeed. The names of the letter writers were not made available for this study, and none of the authors of these letters are aware of the present study.
Letters written to A Friend Indeed were supplied on 5¼-inch computer diskettes, IBM format, in the WordPerfect 5.1 wordprocessing program. Hard copies of the letters were printed, and all coding was hand marked directly on these hard copies.
Following a reading of the first 50 letters, topics were selected and a simple method of coding was devised. Each letter was analyzed for content and assigned applicable codes. Since access to sophisticated coputer programs designed to summarize coded information was not a practical option, the codes were recorded by a simple tally method in such a manner that individual letters could be easily located for later analysis or identification of verbatims (Appendix I).
Each coding form contained 23 records and was assigned an alphabetical code (A, B, C, etc.). Code totals from each coding form were transferred to a summary sheet (Appendix II) with a capacity for information from 529 letters. The entire study of approximately 3,000 letters, to be completed and reported at a later date, will include an additional "Master Summary" sheet which will further summarize totals.
Letters were analyzed in order of publication date. No attempt was made to achieve a random effect. In the true sense of the word, these letters constituted a "convenience" sample (Weiss 1994, p. 15).
Each letter was classified by purpose for writing the letter. A letter could receive more than one classification. These classifications are shown in Table 1 below.
Age of the letter writer was mentioned in 36 letters. Age distribution of these letter writers is shown below in Table 2.
Among letter writers who discussed their menopausal status, 4 were premenopausal, 10 were postmenopausal, and 2 described themselves as uncertain. the category of menopausal was abandoned when it became clear that the term could not be defined from information provided by letter writers. The terms premenopausal and postmenopausal were assigned based on information stated by letter writers. Those mentioning current menstrual periods were classified as premenopausal, and those mentioning cessation of menses were classified as postmenopausal.
Ten letter writers mentioned they were married, only one of them indicating duration of marriage (more than 20 years). None of the letter writers mentioned being single, divorced, or widowed, or having been married more than once. Six letter writers mentioned having children, 5 of whom indicated number of children (2-4).
Specific concerns were expressed by 9 letter writers. Only one concern was expressed by more than one writer: wanting children to move out of their homes. The other concerns mentioned were postmenopausal pregnancy, premature menopause, long-term effect of hormone replacement therapy (HRT), overdoing on calcium, the effect of prednisone on osteoporosis, the effect of early use of diethylstilbestrol (DES) on severity of menopausal symptoms, and safe preventive measures for menopausal symptoms.
Opinions were categorized as physical, philosophy or the meaning of menopause, complaint, and miscellaneous. There were 13 opinions expressed regarding physical issues, 7 opinions expressed regarding the philosophy or meaning of menopause, 3 complaints regarding menopausal issues, and 5 miscellaneous opinions, for a total of 28 opinion statements.
There were 13 statements that were classified as "comments." Two letter writers commented on the restoration of their marriages through counseling, 2 commented on ways they had masked body changes, and 3 commented on issues of self worth. The remaining 6 responses were classified as "miscellaneous."
Statements classified as "perceived needs" fell into five categories: information, shared experience, problem resolution, recognition/action, and acceptance. Results are shown below in Table 3.
Only one letter writer mentioned her mother's experience of menopause. Only 14 letter writers mentioned their health; 12 of these considered their health to be good; 1 mentioned poor health with a diagnosed illness; and a third was a breast cancer survivor.
Current diagnosed illnesses were mentioned 13 times. One diagnosis, cystic breasts, was mentioned 4 times. The other 9 illnesses mentioned were anemia, biological depression, osteoporosis, osteoarthritis, low blood sugar, premenstrual syndrome (PMS), allergies, asthma, and breast cancer with spread to other organs.
The topic of exercise was mentioned by 12 letter writers. Four letter writers indicated they were "active," while 2 said they practiced yoga. The remaining 6 listed different forms of exercise: running, hiking, winter sports, aerobics, and swimming.
The relative difficulty of their menopausal experience was the topic of statements made by 18 letter writers. The menopausal experience was found to be easy with no problems by 3 letter writers, relatively easy with few problems by 2 letter writers, somewhat difficult by 11 letter writers, and very difficult by 2 letter writers.
The menstrual cycle was discussed by 6 letter writers. Sparse flow was mentioned by 2 letter writers, irregular flow was mentioned by 2 letter writers, and regular menstrual periods were mentioned by 2 letter writers.
Symptoms of Menopause
A wide range of symptoms that individual letter writers associated with their menopause were mentioned in 64 letters. In Table 4 below, symptoms mentioned by more than 1 letter writer are listed. Symptoms mentioned by only 1 letter writer are grouped together under "other."
Use of HRT and Drugs
Statements regarding use of HRT numbered 23, with estrogen named as the hormone used 17 times and unspecified hormone 5 times. Two letter writers initially refused a prescription for HRT, then later took the drug and subsequently discontinued use. A prescription for HRT was accepted when first offered by 19 letter writers, 9 of whom were using HRT at the time of writing their letters and 10 of whom had discontinued use.
Length of use of HRT was mentioned by 16 letter writers, as shown in Table 5 below.
Twelve letter writers reported using oral hormone medication, and 2 letter writers reported receiving hormone injections. Premarin, named 11 times, was the only brand name mentioned by letter writers.
Ten letter writers indicated they could not use HRT for reasons of health risk, 1 indicated she would not take it, and 3 letter writers expressed a desire to discontinue HRT use. Side effects reported with estrogen use are shown in Table 6 below.
Though none of the letter writers mentioned using progestin, 2 letter writers mentioned side effects from progestin: weight gain and food cravings. Other drugs in use were tranquilizers (2 letter writers), iron supplement (1 letter writer), and over-the-counter painkillers and sinus medications (1 letter writer).
Use of Vitamins and Herbs
Use of vitamins or herbs was mentioned by 27 letter writers. Mention without comment on effectiveness was made by 7 letter writers, while 16 mentioned that these substances were helpful to them, and 4 indicated use of vitamins or herbs was not helpful. Vitamins or herbs were prescribed by a doctor for 2 letter writers. Three letter writers reported side effects from use of vitamins or herbs.
Satisfaction with quality of medical care was mentioned 26 times. Fewer than 26 letter writers are represented in this figure, however. In a few instances, a letter writer mentioned an unsatisfactory interchange with one doctor and then chose another doctor with whom she was satisfied. A few letter writers were seeing more than one specialist. The majority of statements regarding level of satsifaction with medical care (25 in number) indicated dissatisfaciton with care received. There were two occasions of letter writers "very satisfied" with their medical care, 1 occasion of "satisfied" and 2 occasions of "very dissatisfied."
Statements describing quality of medical care were classified as positive or negative. Only 1 letter writer made a descriptive statement that was classified as positive. This letter writer reported being pleased by a doctor patiently explaining a condition in a concerned, rather than patronizing, manner.
Negative statements regarding quality of medical care are summarized in Table 7 below.
Hysterectomy and Oophorectomy
A hysterectomy experience was mentioned by 17 letter writers. Bilateral oophorectomy with hysterectomy was indicated by 3 letter writers, and unilateral oophorectomy with hysterectomy was indicated by 1 letter writer. One letter writer indicated unilateral oophorectomy with no hysterectomy. Only one letter writer indicated the reasons for her hysterectomy: fibroids, pre-cancerous cells, and flooding. Five letter writers were less than 5 years post-op, and 9 letter writers were more than 5 years post-op.
Age at surgery was mentioned by 7 letter writers. The age group 30-34 had the largest number of cases with 4. There was one case each in the age groups under 30, 35-39, and 60-64. Side effects reported from surgery are reported in Table 8 below.
Hormone therapy following surgery was mentioned by 8 letter writers. Current use (at the time of writing the letter) was mentioned by 3 letter writers, prolonged use but discontinued was mentioned by 2 letter writers, intermittent use was mentioned by 1 letter writer, brief use was mentioned by 1 letter writer, and 1 letter writer mentioned that HRT had never been used following surgery. Premarin was named specifically by 2 letter writers, estrogen was generically named by 1 letter writer, and 1 letter writer referred only to "hormones."
The present material has certain obvious disadvantages. The lack of a standard questionnaire or structured interview resulted in sparse demographic information, as well as poor development of issues. Generalizations concerning the general population cannot be made from this data. A value, nevertheless, remains.
As the study is completed, researchers have an opportunity to measure the development of concerns over the 11-year period during which these letters were written. The frequency with which certain issues, symptoms, or opinions are repeatedly mentioned is a valuable source for identifying topics for structured research efforts.
With more than half of the 161 letter writers in this study writing of their personal experiences with menopause or hysterectomy, it is clear that subscribers to A Friend Indeed are willing to share their experiences with other women. Nearly 40 percent of letter writers asked questions -- questions that their doctors had been unable to answer. One such typical question follows:
I am 47 and for over a year have experienced a sensation of lightheadedness, mostly at the time of my periods. No "cause" can be found despite numerous tests. Could you ask your readers if this is a menopausal symptom and if it relates to stress? (letter no. 11, May 1984)A reply followed several months later, as another letter writer expressed her comfort at having her own experience validated:
In reply to the woman (May issue) who was inquiring about lightheadedness at the time of her periods, I, too, experienced that for the first time last month on the first day of my period. You can imagine my relief when I read her letter. I also have a question. Is there anyone out there with aching breasts? This used to happen about a week before my period and would cease on the first day. Now my breasts can be sore for weeks before I feel relief. (letter no. 41, November 1984)
Interchanges among subscribers to A Friend Indeed, such as those above, are typical in this publication founded in 1984 by Jeanine O'Leary Cobb. In addition to acting as an information exchange, Cobb features short information articles on issues of interest to menopausal women. A recent issue, for example, featured a reprint of an article on HRT, which had originally appeared in a medical journal.
Among letter writers stating specific needs of menopausal women, nearly 50 percent expressed a need for more information, while over 23 percent indicated a need to share experiences with other women. These figures indicate that in the mid 1980s, when these letters were written, women were not getting the information they needed from their doctors or other sources.
There remains today a reluctance to accept the experience of menopausal women. Even the most sympathetic of sources (Doress-Worters & Siegal 1994, p. 121) hesitate to classify the myriad of symptoms reported by subscribers of A Friend Indeed and others (Sheehy 1991, p. 254) as true symptoms of menopause. Every symptom listed by Sheehy (1991, p. 254) in a popular women's magazine was mentioned by one or more from among the 161 letter writers included in this study: nervousness and irritability, menstrual gushing, hot flushes, night sweats, insomnia, sudden bouts of waistline bloat, weight gain, heart palpitations, crying for no reason, temper outbursts, migraines, crawly skin, memory lapses, loss of sexual interest, increased appetite, and palpitations. This official non-recognition of symptoms is a source of frustration to menopausal women. As one letter writer stated: "If these problems occur at menopause, were not present before and go away after, it is reasonable that they are menopause symptoms" (letter no. 146, December 1985).
Medical science's failure to recognize the validity of symptoms whose metabolic pathway is poorly understood has led several generations of doctors to label many symptoms of menopausal patients as "psychosomatic." It is not only a lack of sufficient research that has influenced physician attitudes towards menopausal women. West (1994, p. 9) stated that as a medical school student he was taught that most symptoms experienced by menopausal and hysterectomized women were borne from female neuroses. West stated:
It is interesting to note that except when dealing with women's problems, doctors are trained never to attribute symptoms to psychological factors unless we have ruled out all possible physical causes. (p. 9)