This is a guest post from the NSF Becoming the Messenger workshop by Diane Kholos Wysocki, Ph.D., University of Nebraska, Kearney, Department of Sociology
. I can’t even begin to say how many times I have heard the statement “you must be a mutant, only men can have a bleeding disorder....not women!” And I believed those individuals because they were doctors and nurses and other medical professionals. I believed them because I didn’t know better and because I had been socialized to trust people, especially males, who had both the education and some kind of authority over me and my health. It should have been obvious from the beginning. But it wasn’t. I had a relatively normal birth and my childhood was basically non-eventful. At least, that’s what everyone thought. I had the normal bumps and bruises that were the result of the activities I participated in. However, when I bruised .... I really bruised and my skin stayed bruised for a very long time. Sometimes, my legs looked like I had been in a fight.…and of course it looked like I lost the battle. I started my period when I was nine years old. I was prepared for my cycle to begin and I even remember being excited at this change in my body. However, I also remember it being painful, bleeding a tremendous amount, and needing to change sanitary pads all the time. At the time I didn’t think this was a problem and I thought it was normal for girls to have to change their clothing during their periods and have blood running down their legs. Sometimes, I had to stay home from school because the symptoms were so severe. My mother took me to the gynecologist at a very early age because of the bleeding and pain and I remember the experience as being both frightening and degrading. I was placed on birth control pills by the age of 13. This relieved some of my symptoms, but not enough of them. I now know this is a common course of treatment, because increasing estrogen increases the body’s ability to clot.When I was 16 I had to have my tonsils removed. Surgery went fine, but post operatively, I needed to be taken back because I was bleeding. My mother tells me now, that this was her first indication that something was wrong with me. But still, the doctor made no suggestions to her and looked no farther into why I was bleeding. A few years later I had my wisdom teeth pulled and just like my tonsils, I had to return to the doctor to have my gums packed in order to slow down the oozing. Bleeding problems continued with the birth of my children as well as miscarriages. Because I continued to bleed, I had numerous D&C’s that should have stopped my bleeding problems, but they didn’t. Still no one investigated the bleeding as a problem, but kept treating my problems as hormonal. Finally in 1983, my doctor decided to do a D&C and a lapraspope, known as the “band-aid” surgery because it only requires two tiny incisions in the belly button and just above the pubic hairline. That night I hemorrhaged internally and bled throughout the night. I required many units of blood by the next morning and was given the “cure” that is given to most women with the types of symptoms I showed, a hysterectomy. I was twenty-eight years old. I went on with my life thinking I was really strange and that I was the only woman with a bleeding disorder. I was in isolation. In 1991, I needed sinus surgery. I was really apprehensive about the surgery, but since my sinuses were closed, I had to go through with it. The surgeon referred me to a hematologist. I told him that it seemed strange, but that I didn’t bleed right away, but instead would bleed a few days later. The hematologist, who was not associated with a Hemophilia Treatment Center, told me I was a “nervous Nellie” and that he was sure he could handle me and any problems that came up. So, contrary to the little voice inside my head that told me to “run, find another doctor without an ego problem and one who will believe you” I went through with the surgery, only to go home and bleed. I returned to the hospital and needed to have blood products given once again to help me clot. I spent a total of 11 days in the hospital for a procedure that should have been done as an outpatient. My life turned around in 1995 when I found literature from the Hemophilia Society of Colorado and called them for information. I was told that there were other women with bleeding disorders and was sent more literature to read over. It became apparent that, I was not alone! At the same time I was finishing my Ph.D. in sociology from the University of California in Santa Barbara. With my new found knowledge that I was not a mutant, that women have bleeding disorders, but often go misdiagnosed or undiagnosed, I began researching the area of women with bleeding disorders. I was finally diagnosed correctly at the age of 39 with von Willebrand’s Disease (vWD), which is the most common cause of lifelong bleeding problems in women. Although it is impossible to know how many people have this disease, it is believed that 1 to 3 of every 100 persons (both men and women) are affected. The symptoms of vWD include easy bruising from mucous membranes such as the mouth, nose, gastrointestinal tract, and uterus, and excessive or prolonged bleeding after surgery or dental work. In 1996 I began communicating with women who suffered from all kinds of bleeding disorders in order to investigate their psychosocial and gynecological issues from their own perspective. I came into contact with women at hemophilia conferences, through various Internet bulletin boards such as Hemophilia Support, from advertisements about my project in magazines specifically for the hemophilia community like Belongings or Hemolog and in hemophilia chapter newsletters around the country, from my Internet web page, and through ‘word of mouth.’ I received responses from women who had either vWD (69.8%) or another type of bleeding disorder (30.2%) that included those with Factor I,V,VII, VIII,IX, “Free Bleeders” and Symptomatic Carriers (This is what the women were told by their doctors. Most of the women were not seen by HTC’s, but rather GP’s, Internets, or GYN’s who were not trained in bleeding disorders.) The women in this study were predominantly Caucasian (92%), 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 (To see the entire article see the May 1999 issue of The Female Patient). Furthermore, findings revealed there was on average, almost a 15-year gap between the first bleeding episode and the diagnosis of a bleeding disorder. Women reported long, heavy menstrual cycles with the days of actual bleeding that ran anywhere from 3 to 45 days and the number of days between actual bleeding was 2 to 60 days. The majority of respondents reported very heavy periods, using large amounts of tampons and sanitary pads during each cycle and having periods that became worse as time went on. Treatments for menstrual bleeding included D & C’s (42.9%). One respondent reported having six D & C’s to determine the cause of her abnormal bleeding without any tests to investigate a possible coagulation disorder. When a D & C didn’t work to stop the menstrual bleeding a hysterectomy (42.2%) was performed. Unfortunately the referrals to Hemophilia Treatment Centers for a consultation were rare and only happened in 58.7% of the respondents. However, on average the women in this study were not seen at a HTC until the age of almost 29 years old. That left many years to be undiagnosed, misdiagnosed and mistreated. For More Information National Hemophilia Association http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=314&contentid=1564&rptname=women
