Copyright Sociological Research Online, 1998

Diane Kholos Wysocki (1998) 'But Women Can't Have 'Hemophilia'!: A Look at the Lives of Women with Bleeding Disorder'
Sociological Research Online, vol. 3, no. 4, <http://www.socresonline.org.uk/3/4/3.html>

Abstract

Most of the literature about hemophilia has been from a medical perspective and about men. This on-going project has been to document the lives and 'voices' of women who have a bleeding disorder, their experiences with the medical community, and the course of their diagnosis and treatment. The women in this study were predominantly Caucasian (92%), were currently married (66.7%), had (68.9%), and of those women who had children, the majority of their children (67.9%), both boys and girls, as well as other family members (63.3%) had some type of bleeding disorder. Findings revealed there was on average, a 14 year gap between the first bleeding episode and the diagnosis of a bleeding disorder. Women reported long, heavy menstrual cycles and having consulted a physician for menstrual bleeding as teenagers. Treatments for menstrual bleeding included D and C's (42.9%) and hysterectomies (34.5%), while referrals to Hemophilia Treatment Centers for a consultation were rare.

Keywords:

Gynecological Surgery; Hemophilia; Menorrhagia; Von Willebrand Disease; Women

Introduction

'We wish to plead our own cause. Too long have others spoken for us.'
Cited in White, 1994.
Written in 1827 by the founders of Freedom's Journal, the first black American newspaper

1.1

Sociology as a discipline was born androcentric, which mistakes the "male perspectives, beliefs, attitudes, standards, values and perceptions for all human perceptions" (Ruth,1990: p. 8). Classical social theories developed by Marx, Durkheim and Weber, for example, typically speak from a non-gendered perspective (Marshall, 1994) and discuss the social world that ostensibly involves all humanity but presents a false universalism by ignoring gender differences. Similarly, men are also largely responsible for the historical development of the sciences such as biology, medicine and health care. In the construction of these scientific disciplines and their knowledge, men have traditionally made key decisions about what topics should be researched, how they should be studied, and the uses made of the research (Harding, 1991).

1.2

The importance of modern scientific research in improving health and prolonging life for both sexes is without question. However, the work of feminist standpoint epistemologists (Harding, 1991; Haraway, 1988) indicates that several scientific disciplines have historically ignored or excluded women from the construction and production of their knowledge. While women have frequently been the objects of study, they have traditionally had little input in the construction of knowledge regarding their health and bodies (Schneider and Stoller, 1995) which allows the unequal hierarchies to be maintained and perpetuated.

1.3

Throughout history women have been the major consumers of health care in our society because they have babies, most often assume responsibility for sick children and contraception, and have a more complex anatomy than men (Gardner, 1981: p. 130). Perhaps because women are the major consumers of health care, they have 'traditionally been seen as frail' which has granted doctors the freedom to 'capitalize on women's weaknesses by inventing treatments' that are often times more damaging than the symptoms. Countless studies have shown that all health care is not equal, but is dependent upon social factors including race, sex and social class (Ehrenreich and English, 1979; Graham and Oakley, 1981; Schur, 1984; Schneider and Stoller, 1995).

1.4

To explore the inequality in health care, the primary purpose of this research project is to systematically investigate the lives of women who have shown very strong symptoms of some type of bleeding disorder, and who have traditionally been under-diagnosed, misdiagnosed and/or received inappropriate treatments for their disease. Currently, there is an increasing amount of literature about people with hemophilia, however, the majority of that literature is from a medical perspective and concerns men only. This research project will seek to document the lives and 'voices' of women who have a bleeding disorder, their experiences with the medical community, and the course of their diagnosis and treatment.

All Health Care Is Not Created Equal

2.1

While medical science has made major advancements in the care and diagnosis of disease, much of the literature focuses on the diseases and needs of white male patients (Ehrenreich and English, 1979: p. 124; White, 1994). Women and men continue to be treated differently with regard to health, illness, and treatments (Nadelson, 1993). For example, HIV/AIDS researchers knew early in the pandemic that women in the United States were becoming infected at a higher rate than men, that 6 to 8 million women would become infected by the year 2000, that AIDS is the leading cause of death for women between the ages of 15-24, and that women have a difficult time disclosing their HIV/AIDS status because of concerns about discrimination, confidentiality, and fear for their children (Schneider and Stoller, 1995; Moneyham, Seals et al, 1996). Similarly, coronary heart disease (CHD) has been found to be the silent number one killer of women in the United States (Hennekens, et al, 1996). Yet the majority of physicians sampled did not know CHD was such a killer and believed that the signs and symptoms were the same for women as they are for men. According to Hennekens, et al, (1996), women receive heart surgery less often than men and by the time surgery is performed, women were more advanced. Medical attention, research, and clinical studies for women are still very recent events (Schneider and Stoller, 1995; Semler, 1995) while 'research on disorders that predominantly or substantially affect women' are greatly lacking (Nadelson, 1993: 1311).

2.2

Gender issues within health care are not new. There have always been problems within a system that tends to objectify women, treats them as the 'other', and allows them little participation in priority setting or policy making (Jacobson, 1991; Nadelson, 1993; Semler, 1995). The objectification of women began early on when women's networks of sharing and support were replaced by the exclusiveness of the male medical professional, who 'hoarded up his knowledge as a kind of property, to be dispensed to wealthy patronsŠ.and involved the destruction of women's networks of mutual help, leaving women in a position of isolation and dependency' (Ehrenreich and English, 1979: p. 34). This type of medical care placed women in danger of being treated, regardless of their symptoms, by purging, bleeding, blistering, vomiting and ultimately cutting.

2.3

While science and technology has advanced health care and the treatment of illness, the same cannot be said about the ideas that doctors have learned and carry into their treatment of female patients. In medical school, doctors preparing to practice medicine on actual patients have been found to be lacking in some areas, especially in understanding the medical needs of women. Yet at the same time, they are learning to control the lives of other people and believe they can do no wrong (Smith, 1992). Smith, an OB/GYN says this power is problematic because

it has been shown time and again that human beings who are given power over other human beings will abuse it. Physicians, unfortunately have created for themselves an inappropriate societal role and status that includes a high degree of power and authority....Doctors live in their own subculture, which reinforces their self-image as totally honest, well-meaning, caring, and special members of society. Many doctors regularly abuse women as a result of underlying prejudice and self-deception. They have concluded honestly, though mistakenly, that they occupy a special niche that should be unchallenged, and that they possess a valid body of knowledge that allows them to treat without harm. Doctors who do unnecessary operations on women almost always genuinely believe that they are acting in the best interest of the women. (Smith, 1992:18-19)

2.4

Even though doctors in medical school believe they want to treat the whole person, as they progress through school their feelings for patients are overpowered by the need to be efficient and the desire to make the most money from those who can afford to pay for their services. While the function of health care is to 'promote, maintain and restore an individual's physical, mental and social functioning to their maximum well-being' (Bowen, 1996: p. 1), this is not always how patients perceive the care provided by their doctors. A study testing consumer satisfaction of 32 clients seeking an annual gynecological exam found that overall satisfaction with the MD was low; the women believed the doctor did not spend enough time with them, said that they felt rushed, and claimed that the doctor didn't offer suggestions to improve their health of the patient (Bowen, 1996).

2.5

Another problem associated with women's health care is that doctors are usually in specialties that rarely overlap with one another. Most women use a gynecologist as their primary source of medical care. However, most OB/GYN's have gone into this specialty because it is a 'happy field' where they can fix problems and deliver babies who usually are born in good health. As a result they don't often learn about problems outside of their own area. In Scully's work with doctors learning to be OB/GYN's, she found they also have a 'cure complex,' meaning they derive satisfaction from surgical intervention and become frustrated by less aggressive medical treatment (Scully, 1980: p. 87).

2.6

An additional problem is that the majority 80%) of doctors who specialize in OB/GYN are male. According to Smith (1992: p. 2):

women suffer most severely because they are at the hands of a specialty that is dominated by males, acting and thinking like males, and an entire system of medical research and treatment that is shaped by males.

2.7

Similarly, Scully found that

women are neither complacent about nor pleased with the obstetrical and gynecological care. They are insulted by paternalistic physicians who expect them to act like happy, obedient children. The loss of reproductive organs is more likely to be a cause for mourning than rejoicing, and birth is sometimes experienced as a depressing rather than a joyous event. From this perspective, the happy specialty is a contradiction in terms created by male practitioners who, because they cannot experience the problems they treat, tend to trivialize or misinterpret the significance these problems hold for women (Scully, 1980: p. 93)

2.8

According to Jacobson (1991: p. 5) there is a 'crisis in women's reproductive health....[where] illnesses and deaths from complications of pregnancy, childbirth, and unsafe abortion, diseases of the reproductive tract, and the improper use of contraceptive methods top the list of heath threats to women of reproductive age worldwide.' While some might equate the reproductive health of women only with motherhood, it also includes other aspects, such as diseases of the reproductive tract, infections, and contraceptive use (Jacobson, 1991).

Bleeding Disorders 101

3.1

To briefly explain the physiology of bleeding disorders, when individuals, who have normal blood clotting abilities, get hurt or cut, bleeding is controlled by a three step process. After bleeding begins, the first step of the clotting process is when the blood vessels constrict. Secondly, a platelet plug forms to stop the blood from leaking out. This plug is made up of particles in the blood called platelets, which stick to the blood vessel around the injury site. The platelets are brought to the site of bleeding by a protein that circulates in the plasma, termed von Willebrand's Factor. This protein is capable of binding platelets together and to bind collagen that becomes exposed under the damaged blood vessel. The platelets themselves then form the 'plug' by aggregation that in turn stimulates other platelets to bind at the site of bleeding where this initial 'plug' is being formed. Thirdly, this 'plug' is stabilized by the formation of a protein polymer termed fibrin derived by a series of reactions of 12 different clotting factors. The fibrin clot is a jelly-like substance that seals and stabilizes the injury.

3.2

Hemophilia^[1] is a genetic blood clotting disorder in which the patient is unable to produce one of the clotting factors necessary to form the fibrin clot. It is believed that hemophilia affects about 20,000 (Americans Foundation, 1996). Hemophilia is considered a sex-linked inherited disorder, because the disease is carried on the X chromosome that comes from the female. Males receive a Y chromosome from their father and an X chromosome from their mother, while females receive two X chromosomes. It is the X chromosome that carries the gene that contain the instructions for making clotting factors #VIII and #IX which play pivotal roles in the clotting process. When there is a defect or error in the genetic building block (termed DNA) of one of the X chromosomes that makes either coagulation factor VIII (termed "Hemophilia A") or IX (termed "Hemophilia B"), the factor is produced in decreased amount so the patient is apt to bleed frequently and easily.

3.3

While the hemophilia gene is usually passed from generation to generation through the female who carries two X chromosomes, such patients can still bleed for various reasons:

1. If there is a mutation in the other X chromosome gene, then the amount of clotting factor produced will be very low;
2. If the other 'normal' X chromosome is inactivated - a process termed Lyonization which happens normally in utero- where the amount of clotting factor produced will be relatively low;
3. If there is considerable trauma or during menstruation, there can be more than the usual amount of bleeding in females who carry the hemophilia gene-technically such a person is termed a 'carrier' but they are also at a greater risk to have bleeding difficulties than the normal female population (Miller, 1992; Foundation, 1996).

3.4

But, the most common cause of life-long bleeding in females in not hemophilia, but a bleeding disorder described by Dr. Erik von Willebrand in 1925 of a young female who had extensive bleeding during childhood. Von Willebrand's Disease (vWD)^[2] and is estimated to affect 1 out of every 100 Americans (Peter Kouides, personal e-mail12/96). Symptoms of vWD include bruising, bleeding from mucus membranes such as the mouth, nose, gastrointestinal tract and uterus, and bleeding after surgery or dental work. vWD, usually an inherited bleeding disorder passed from one generation to the next, can be a mutation in the gene that produces vWD or acquired later on in life (Aylesworth et al, 1995).

3.5

Until very recently the medical literature rarely mentioned that women can be affected with any kind of bleeding disorder (Foster, 1995). As a result, the incidence of women who have bleeding disorders is unclear. Most often, women are undiagnosed or misdiagnosed, even though they present themselves to their physicians with such symptoms as bruising and menorrhagia (abnormal menstrual bleeding) (Marble, 1995). For instance, Lusher states that:

the most common bleeding disorder in the United States von Willebrand's disease may be the underlying cause of menorrhagia in about 9 to 11% of all womenŠamong adolescent girls who are going through menarche, coagulopathies have been found to account for a much higher percentage - 45% (Lusher, 1995: p. 30).

3.6

The problem, Lusher found in a discussion at the annual meeting of the American College of Obstetricians and Gynecologists was that:

physicians focus[ed] so much on the obstetric and gynecologic causes of abnormal bleeding, they often neglect[ed] to test their patients for von Willebrand's diseaseŠ.[which] leads them to treat the condition inappropriately (Lusher, 1995).

3.7

The problems that are inherent in the health care are not the same for men and women (Allbutt, et al, 1909; Franfort, 1972; Ehrenreich and English, 1979; Young, 1981: p. 148). If a woman seeks out a medical opinion on her bleeding symptoms, few physicians are willing to suggest or test for the possibility of a bleeding disorder.

Methods - Data Collection

4.1

This research project utilizes multiple methods that are common in conducting feminist research (Reinharz, 1992; Maynard and Purvis, 1994). My major focus as a feminist researcher is to 'emphasize the importance of listening to, recording and understanding women's own descriptions and accounts' of living with what is commonly thought to be a 'male' disease (Maynard and Purvis, 1994: p. 10).

4.2

For this study, I have utilized a 'snowball' technique to develop a convenience sample of women who have been told they have some type of bleeding disorder and who were willing to take part in my project. From April 1996 to the present time, I have been in contact with these women in a number of ways. First, I traveled to conferences sponsored by either the U.S. National Hemophilia Foundation or Hemophilia state chapters that attracted women with bleeding disorders. There I simply asked women to sign up if they were willing to participate in my study. Once a woman signed up, I either gave her a questionnaire at the conference or sent one to her home. Second, I advertised my project on an Internet bulletin board called Hemophilia Support^[3]. From there, the description of my project was sent to other Hemophilia bulletin boards, on Prodigy and America Online, by participants who helped pass the word of my study on to other women. Third, I advertised my project in magazines specifically for the hemophilia community like Belongings or Hemolog and in hemophilia chapter newsletters around the United States. And fourth, I found respondents through 'word of mouth.'^[4].

4.3

My use of a convenience sample is a direct result of some difficulties I faced in investigating this special population. First, the parameters of this population (women with bleeding disorders) were not known. Women with the symptoms of a bleeding disorder were often misdiagnosed as the result of social factors, including the androcentric evolution of medical information and development of health care practices. Second, since women with a bleeding disorder have commonly been misdiagnosed they often faced difficulties themselves in accessing information about their condition and in finding others with a similar disorder. One of the places women have gone for help and information has been the Internet. Topic- based Internet bulletin boards have been successfully used by other researchers (Coomber, 1997; Smith, 1997) to collect data on individuals who participate in highly specialized (and often stigmatized) activities, interests or identities. Coomber (1997:&182;4.2) notes that, although his voluntaristic sample of drug dealers surveyed through the Internet could never be representative, his technique allowed him to achieve "a broader sample (in terms of population sought) than would be achieved by other convenience sampling methods," which is true of this project as well. Third, I triangulated my convenience sample "to enhance understanding both by adding layers of information and by using one type of data to validate and refine another" (Reinharz, 1992: p. 201). The sample is composed overwhelmingly of women from the U.S., making the results difficult to apply to women with bleeding disorders in other nations.

4.4

To date, I have received 90 usable questionnaires via the conferences, e-mail, or postal services. All respondents were females, whose ages ranged from 21 to 79 years (M = 42.7). The women were predominantly Caucasian (92%) and had at least some higher education after high school (85.6%). Most were currently married (66.7%), had children (68.9%) and of those women who had children, the majority of their children (67.9%), both boys and girls, as well as other family members (63.3%) had some type of bleeding disorder.

Findings - First Bleeding Episodes

5.1

The majority (62.5%) of the respondents in this study remembered having their first bleeding episode by age 10. Some women explained they began bleeding as early as birth (8.6%), when the use of forceps caused head trauma (hematoma) or when the umbilical cord was cut; many others (43%) reported that they had their first bleeding experience by the time they were 5 years old. The types of bleeding problems the respondents mentioned varied. One type was repeated uncontrollable nose bleeds that happened either spontaneously or as a result from being hit in the face while playing. One respondent stated that she didn't:

know what brought on the bleedingŠ..I had a lot of bad bloody noses very early on. Once when I was less than 5 years old I was take to the hospital where I was 'packed' [with gauze to stop the bleeding] (Respondent #3)

5.2

Another respondent stated that:

We had a graduation party at my house and I scratched a scab or a small spot and it bled through and ran down my face when I removed the skin and it squirted like a hose. I put ice on it but it wouldn't stop. One and a half hours later still bleeding. I called the doctor and went to the emergency room. He couldn't believe a small hole would bleed like that. He used a shaving pencil) but that didn't work- he applied pressure for 10 minutes and it stopped but when I started to leave it started again. He used a shot of something she didn't know) it caused a large white ring on my forehead and it stopped bleeding. That was really Strange!! (Respondent #32)

5.3

Other women reported that they first suspected that something was wrong when they had some type of surgery, such as tonsillectomy, deviated septum, appendectomy or having their teeth pulled. A respondent who had trouble during a tonsillectomy due to her undiagnosed bleeding disorder reported that her sister had had the same problems during her tonsillectomy a few years earlier. The sister, who was seven years old at the time of the surgery, began bleeding almost immediately and the doctors were unable to stop it. The patient died before a bleeding disorder diagnosis was made.

5.4

Not all of the respondents remembered a particular bleeding episode early in their life, but rather reported that their first episode of bleeding took place as an adult. The bleeding might have been the result of hurting themselves with sharp objects or being in some type of accident. A fifty year old woman stated her first episode was at age thirty-five after she:

had a car wreck and had a lot of pain and bruising in my arm. We knew I was a carrier [of hemophilia] but until that time had had no internal bleeding problems (Respondent #2)

5.5

Another 41 year old respondent, just found out about her bleeding disorder this year when she had:

trauma [that] was induced when I caught my wrists and arm in a security gate. [I] sustained cracked wrist bone and three deep tissue bleeds on [my] arm and shoulder (Respondent #78).

Puberty, Menstruation and the Gynecological History

6.1

Reaching puberty and starting menstruation is very difficult for young girls who have a bleeding disorder. Heavy bleeding during a menstrual cycle is also often the first indication that something might be wrong. However, most young girls do not know what really constitutes a normal period and therefore they might not realize that the amount of blood they are losing is abnormal. Research suggests that a regular menstrual cycle should begin around age 11 to 13 (Rategan, 1994; DiFiori, 1995), should last anywhere from 3 to 7 days (Guyton, 1992; Wingerd, 1994), be 28.1 days apart, and that blood loss should be less than 80mL (Nesse, 1991). However, since most of the information for young girls about menstruation comes from school nurses, friends, mothers, and the media (Stoltzman, 1986; Foster, 1995; Swenson et al, 1995) and since women don't normally compare the amount of blood they lose during a menstrual cycle with one another, it is not likely the girl will find out that the amount of blood she is passing monthly is unusual.

6.2

The women in this study report that they began their menstrual periods anywhere from age 8 to 16, with a mean of 12.4 years old (SD = 1.43), which appears to be within the norm as described in the literature. However, the kinds of periods the women reported seemed to be unusually long, frequent, and very heavy. The days reported of actual bleeding ran anywhere from 3 to 45^[5] days with a mean of 10.1 days (SD = 6.35). The number of days between actual bleeding was 2 to 60 days with a mean of 24.19 (SD = 8.64). The majority of respondents reported very heavy periods, using large amounts of tampons and sanitary pads during each cycle and having periods that got worse as time went on. Women reported they went through '24 double pads a day' (Respondent #103), 'between 60 to 90 pads a period' (Respondent #57), '55-60 pads a period' (Respondent #26) and another said she went through 'tonsŠ. 2-3 boxes of pads at least [for each period] (Respondent #16). Still another respondent wrote that her periods were:

very heavy, had much spotting in between, had huge clots, and anemia alsoŠ.. one period = 1 box super plus tampons, 2 boxes Kotex Overnights, 4-5 Depend undergarments (Respondent #133)

6.3

Virtually all of the women reported having very embarrassing experiences while they were out in public because they were bleeding so badly. Fear of bleeding or the actual bleeding often kept them home from school or work. The most common experience these respondents reported was bleeding through their clothing while they were at school or work. Respondent #40 said she remembers

I had strict teachers who wouldn't allow me to use the rest room during class. I would change my pad before a class started, but by the time the hour was up, I would already have soaked through to my outer clothes. My mom was always home and she would bring me new clothes to change into. Unfortunately my parents didn't talk to the teachers. I had a hard time walking home from the bus stop too. There were a few times that I didn't make it home before I soaked my clothes. It was very embarrassing. I would say I had an episode like one of these at least once a month for 2 years.

6.4

Similarly, one respondent remembers 'starting in class and the teacher not allowing me to leave class for the restroom' (Respondent #16) while another woman remembers being in 'fifth grade age 10 [and] I soaked through my pads & had a big blood stain on my skirt. My teacher was scolding me for not wearing pads correctly' (Respondent #22). Still another young woman remembers thinking that with 'my 1st few periods I didn't realize I was going to go from spotting to bucketsful of blood' (Respondent #57). These women clearly didn't know the definition of a 'normal' period or how long their periods should last. Many assumed the heavy bleeding they were having was 'normal' and accepted it as part of becoming a woman.

GYN Exam

7.1

Because of excessive bleeding, many of the respondents in this study were taken to a doctor who did a gynecological (GYN) pelvic exam on them soon after their periods began to see if they were having normal periods. The women who reported going to the doctor because of abnormal menstrual bleeding, did so on average, by the time they were 14.72 years old (SD = 3.42). This is much younger than those women who reported going for a GYN exam for pregnancy (18.33 years) or a regular gynecological check up (18.38 years).

7.2

As all of us who have had a vaginal examination know, they are not much fun. Graham and Oakley (1981) found that in a study of obstetricians, pregnant women and their first vaginal exams much anxiety associated with the examinations. The women were often terrified, physically hurt, were sometimes were left bleeding after the internal exam, and felt they had an obvious lack of control over the situation. The study also found a communication gap between the patient and the physician who rarely explained the rationale for the exam or how it would be administered.

7.3

The same results were found in this study of the women who had a GYN exam at an early age for abnormal bleeding problems. The majority of women in this study reported having a negative experience with the doctor who first did a pelvic exam on them. They remembered their first gynecological exam in the following ways: 'Disgusting and embarrassing' (Respondent #103); 'Brutal. My pelvis was black and blue after he got done with me' (Respondent #133); 'Frightening & uncomfortable' (Respondent #21); 'It was very scary! Also it broke my 'hymen' and there was bleeding with that also!' (Respondent #25); 'Horrid - male G. P.[General Practitioner] was a typical all knowing doctor. My input was not requested or appreciated' (Respondent #26); 'Awful! I had a breast exam (already developed at 10) and pelvic. The Dr. was not very nice and told me 'the bleeding was normal' and told my dad I probably over dramatized the pain of cramps because I was so young' (Respondent #57); 'First exam - by G. P. [general practitioner] - I hurt for days, he was sadistic - I swear he stuck his arm clear up to his elbow inside my body. 1st gynecologist - much gentler, treated me as if I had real complaints, and prescribed birth control to control symptoms' (Respondent #9).

7.4

One of the most common medical ways of controlling abnormal uterine bleeding is to place the individual on oral contraceptives (Foster, 1995; Rosenfeld, 1996). This treatment has been found to reduce the flow of menstrual blow by about 50 percent (Brenner et al, 1994). The results of using oral contraceptives to treat abnormal bleeding varied with the respondents in this sample. Some reported little change, while many others reported positive changes that kept bleeding under some control for quite awhile. One respondent said that 'After 17 years of age I was put on birth control pills [because I] had a period that lasted over two weeks which I was hospitalized for '(Respondent #57). For this respondent, the results were favorable^[6]. However, many reported that while birth control pills lessened the bleeding problems, there were serious side effects to consider. Some of the side effects of birth control pills were manageable; others however, were dangerous. One respondent stated that she developed 'thrombophlebitis^[7] [and had] to stay in the hospital for 12 days. I was told to never take the pill again' (Respondent #137). Another common complaint was 'excessive weight gain, mood swings, edema (Respondent #21).

7.5

When oral contraceptives do not work to control abnormal uterine bleeding, the next treatment of choice is usually a dilation and curettage (D and C) which (Keyser, 1988) describes as ' second most frequently performed operation throughout the United States [where] the lining of the uterus is scraped off curetted) after the opening to the uterus has been stretched dialated).' Almost half (42.9%) of the respondents in my sample have had D and C's performed on them. One respondent reported having six D and C's to determine the cause of her abnormal bleeding. The problem is that if the woman actually has a bleeding disorder, the D and C will not stop the bleeding in most cases. Since bleeding disorders hinder the body's ability to clot or to hold the clot together, if the uterus is scraped, it will continue to bleed.

7.6

If contraceptive pills and D and C's do not control bleeding in women, the surgery most often inflicted on women's bodies in order to 'cure' them, is the biggest, most dangerous, and most often abused: the hysterectomy (Scully, 1980; Gjenvick and Simon, 1988; Kinnick and Leners, 1995). According to Zola (1997), 'the frequency of hysterectomies seems not so highly correlated as one might think with the presence of organic disease.' Regardless, it is currently estimated that more than 650,000 hysterectomies are performed annually. Among the many problems associated with the surgery are depression, loss of sexual responsiveness and self-esteem, and in some cases even death (Gjenvick and Simon 1988). In this study, 34.5% of the women reported already having a hysterectomy, while others were being advised by their physicians to think about undergoing the surgery. One woman in this study had her hysterectomy at 18 years old. Most often the women had a hysterectomy to stop uncontrollable bleeding. One respondent stated that she had her hysterectomy at age 40 because 'I almost bled to death. The GYN told me he was disappointed in my slow recovery after the surgery. He never even tested me for anemia, or a bleeding disorder and never sent me to a hematologist' (Respondent #83). As with a D and C, if the bleeding is caused by an undiagnosed bleeding disorder, a hysterectomy will not solve the problem. A 29 year old women said she had three D and C's for bleeding, 6 laprascopes for abdominal pain, and a hysterectomy at age 23 to 'save my life' after bleeding. Nine months after her hysterectomy, she had another abdominal surgery for large hemotomas (blood clots) and hemorrhaging. This women was never sent for a referral to a hematologist and did not find her way to a Hemophilia Treatment Center for a diagnosis of her bleeding disorder until she was 28 years old.

Diagnosis of a Bleeding Disorder

8.1

Most of the respondents in this study were not diagnosed by the doctor they saw during their first bleeding episode. Similarly, even though they were having severe symptoms of bleeding as children, they were not diagnosed with a bleeding disorder until much later in life, which on average was not until age 24. This means that the women suffered with bleeding problems an average of 14 years before they received the treatment they needed or were referred to a physician who knew about bleeding disorders. This statistic is all the more amazing since over 64% of the women reported having family members with some type of bleeding disorder. Cases like these tend to support the notion that women's voices are rarely heard by their physician.

8.2

Referrals to a Hemophilia Treatment Center (HTC) for consultation soon after the first bleeding episode were rare. The average age of first going to a HTC for a proper diagnosis and treatment was 29.4 years (SD = 12.83) and only 55.4% of the women in this study ever received treatment at a HTC. It appears that most of the physicians consulted by women with bleeding symptoms were unable or unwilling to diagnose the problem as a bleeding disorder and/or make referrals. One respondent stated that her general doctor blamed her bleeding on the oral surgeon and felt the surgeon had somehow 'committed malpractice, but didn't know what to do [about the situation].' Another physician blamed the respondents bleeding problems on her weight and said that if she would lose weight she wouldn't be bleeding as much. Another respondent stated 'my daughter is considered mild hemophilia A because her levels are 29% [of the normal 100%] but doctors say women can't have hemophilia. When will they learn!' (Respondent #7).

8.3

Most of the respondents stated they received little, if any information from their doctors about their bleeding disorders, unless they were connected to a Hemophilia Treatment Center, which specializes in hemophilia. In order to get information, the patients or their parents usually had to gather it on their own (Respondent #121).

What Do Women With Bleeding Disorders Want

9.1

It has been found that patients need both verbal and non verbal caring behaviors as part of their health treatments (Gaut and Leininger, 1991; Kiblinger, 1992). These treatments include being talked to by their health care providers and having health issues explained them. The women in my study want the same kind of behaviors from their health care providers. However, most have became very tired and angry about having received incorrect information about their symptoms, having surgical procedures inflicted on their bodies and being mis-diagnosed. The biggest complaint I received was from those women who had been told by their doctors to not have children because it would be too dangerous for them. Other women were unable to become pregnant because they had had hysterectomies early in their lives to 'correct' heavy bleeding that made them incapable of becoming pregnant. One respondent said

I feel I have missed out on a lot. I have always had to plan all events around my monthly cycle. Although the final decision was mine, I resent the fact that I had to have the hysterectomy before ever having children (Respondent #133)

9.2

The women also stated that they are very tired of being told that they are the only females who have a bleeding disorder, that they must be a 'mutant,' or that they can't possibly have a bleeding disorder because they are not male. They are frustrated at dealing with the medical community which does not take into consideration a woman's 'voice' and knowledge about her own body. One woman stated that 'getting people to understand that I do have bleeding problems and that it doesn't affect just males' (Respondent #2) was very important to her. Other women have made the following comments about their treatment by the medical community: 'The lack of knowledge and the disbelieving attitude of the medical profession' (Respondent #22); 'The stigma that it's in your head or hormones, or 'I am the doctor; I know.' (Respondent #24); 'Getting doctors and nurses to acknowledge it especially in the ER' (Respondent #57); 'Getting medical persons (R.N's, Drs.) to recognize that I now) know what I'm talking about re: my body & how it responds to meds. etc.' (Respondent #9); 'When doctors treat you like an idiot for so long your self-esteem doesn't flourish. I am just learning to stand up for myself' (Respondent #24); and 'It makes me feel vulnerable in a way I can't control' (Respondent #121).

Conclusions

10.1

Historically, men have dominated in the development of scientific disciplines and have traditionally made key decisions about what topics should be researched, how they should be studied, and the uses made of the research (Harding, 1991). When these disciplines have produced information about women, it has often been without women's input. Therefore, the primary purpose of this research project has been to systematically investigate the lives of women to document their lives, listen to their 'voices,' their experiences with the medical community, and the course of their diagnosis and treatment for their bleeding disorder.

10.2

The data presented in this paper has been collected from health-care consumers through both surveys and interviews. While survey research has provided a wealth of useful information on the demographic characteristics of patients and doctors, the types of illnesses patients experience and the treatments offered by medical professionals, survey research alone is not enough to give a clear picture of the issues from a consumers' perspective. For example, surveys generally focus on the breadth of responses rather than the depth because the questions are most often predetermined and do not allow for probing to occur. Furthermore, surveys are weak at showing the context in which the individuals' live and act (Frey, 1989). Interviewing as a way to gain information from health-care consumers augments the weaknesses of exclusively survey-based studies and listens to the experiences and perspectives of consumers themselves.

10.3

In particular, the qualitative aspect of this project may well have led to an increased feeling of empowerment among the respondents in both developing their own awareness of each other's experiences and in starting dialogues with others about their condition. Since this project began, I have heard from hundreds of women, teens, parents of little girls, hemophilia treatment centers, hemophilia societies, and even some researchers doing work in the area of women with bleeding disorders^[8]. Women are calling to ask questions about their disorder or to get referrals to hemophilia treatment centers where they can get a proper diagnosis and/or better treatment for their disease. They also call to ask for validation that they are just not crazy. The women have taken on the stigma associated with feeling like they are somehow different from other women (Schur, 1984). Just telling them they are not crazy, or mutants, and that they can have a bleeding disorder and joint bleeds, offers a huge sense of relief to women who have been isolated for so long.

10.4

The most helpful activity for women who have bleeding disorders is networking with other women who have similar problems. Networking helps women realize that they are not alone. It also helps them become educated consumers about their disease, rather than staying dependent on professionals who sometimes make unwise decisions for them.

10.5

Networking is also very important for women who say that 'my disorder is rare enough that I can't find anyone else like me' (Respondent #137). Fortunately, one of the extra benefits of this research project is that additional projects are arising from the interest in women with bleeding disorders. Currently, there is a database of women who have bleeding disorders that is being maintained by some of us involved in the hemophilia community. These databases allow us to connect people who have similar bleeding disorders or have children with similar problems with one another. For instance, a friend and also a respondent, who is very active in the hemophilia community has a rare disorder and was told by her physicians that she is the only one in the entire world with this disorder. She currently has a list of over 12 people whom she has located with the same disorder. When a teenager calls me and wants to meet other girls her age who are going through similar issues because of their bleeding disorders, the databases can make this connection possible, which strengthens and helps women within this community.

10.6

This research is especially relevant for health professionals for several reasons. First, this research may increase health care professional's awareness of the prevalence of women with bleeding disorders. Second, by documenting the specific symptoms of women with bleeding disorders, health care providers can better diagnose and treat the condition. They can also be made aware of the specific problems that women have with their bleeding disorders that men don't experience. Third, presenting the experiences of women with bleeding disorder helps document the misdiagnosis of such cases as a process, one where differential power relations are socially imbedded in the structure of a traditional doctor-patient relationship (Scully, 1980). Such research may provide the impetus for medical professionals to begin and develop dialogues with their patients so that the voices and perspectives of consumers, particularly marginalized consumers, are heard. One woman e-mailed me and said she

made contact with 4 hematologists/oncologist...and asked them if they would give their female patients your survey, I know these doctors......and I knew somewhat how they would react......so far only one was interested, the others are making excuses.....like no time, not of interest, I was even told if the woman is having problem she should join a support group and they will provide this info for them even though he knows there is no support group..........I guess you could write all day about how women are not heard. I suppose we could blame managed care because the doctors do. To my surprise even the female doctors treat us the same as the males (personal e- mail 11/96)

10.7

Ultimately, the most important part of this research project is to help both women and their doctors understand that there could be another reason that women are bleeding and to help them learn what should be considered truly abnormal bleeding. My hope is that this project informs women that they should be able to talk with their doctor who should be willing to listen to their complaints and take them seriously. A 27 year old mother of 2 succinctly summed up the problem for women by saying

at this point in my life I just want my questions answered. I want an accurate diagnosis so I may get an accurate treatment program. I don't have any more time to argue with doctors, nurses, etc.

Notes

¹For more information on hemophilia see http://www.wfh.org/facts.html.

²Dr. von Willebrand originally called this disease pseudohemophilia or false hemophilia.

³To find out more about this BB contact - Hemophilia-Support-Approval@Web-Depot.COM.

⁴ It is important to keep in mind that all of my respondents have somehow become aware of their bleeding disorders and have become connected to other women or groups. This study does not represent all women in the general population who have a bleeding disorders, but have not been diagnosed.

⁵Women who reported they bled this long, reported they had only a few days between their menstrual cycles.

⁶It is important to keep in mind, that most of these women didn't know they had a bleeding disorder. So, many thought them thought that the birth control pills would just help control their bleeding. When they wanted to get pregnant they stopped the pills. Pregnancy, just like the birth control, raises the estrogen level which is what sometimes can raise the factor levels that will increase clotting. If the woman nurses her baby, that also tends to keep the estrogen level up. This doesn't always control bleeding however.

⁷ This is a blood clot that causes vein inflammation which may interfere with circulation of the area, and it may break off and travel through the blood stream thus it may lodge in the brain, lungs, heart, or other area, causing severe damage to that organ. For more information on this you may refer to http://www.healthanswers.com/database/ami/converted/000156.html or http://www.healthanswers.com/database/ami/converted/001108.html

⁸The other researchers tend to be nurses or doctors looking at the medical aspects of this disease. Their work is very different from my research which is grounded in a feminist sociological standpoint. Regardless, what we are finding, when we compare notes, is that our different modes of research can go together nicely to help us all learn more about women living with this disease.

Acknowledgements

This project was partially funded by a RSC grant from the University of Nebraska at Kearney and a travel grant from Centeon. The author wishes to thank Kurt Borchard for helping me make the revisions for this article at the very last minute. Without his help and insight this final version would not have been completed on time. The author also wishes to thank Carol Lilly, Tom Clark, Peter Kouides, Cindy Neveu and Jill Williams for their comments on the original draft of this paper and to thank the women who have been part of this project and who have given their time, energy, and selves to make the diagnosis of this disease just a little bit easier for females in the future.

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