For my daughter, Katie
This paper is about the stories that we tell ourselves and those that are told to us. I am not a member of the medical profession, my training is in reading narratives, signs, and bodies. At the moment I am reading my own body, speaking my own illness, in an attempt to solve an enigma for which traditional medicine has no reliable diagnosis and, in many cases no cure. Many women who have also experienced episodes of candida, or know others with this problem, have shared their stories with me, and to those women I extend my thanks and wish to acknowledge the deepening of bonds that is created with such an exchange of information about the female body. It is through this pooling of knowledge that we can empower ourselves to improve the quality of our lives and our access to sexual pleasure. So much of this speculative knowledge remains in the hands of male medical researchers; it is time for funded, specific research to be done by female researchers who have a more urgent need to find an effective long lasting treatment for this condition.
Much has been written on candidiasis in medical journals in the last five years. In fact, if you will pardon the pun, we are experiencing a growth industry in this area of medical research. Of the 2013 articles that have been published on candida albicans (the most commonly occurring type of candida infection) in medical journals from around the world from 1991-1996, only 235 are on vulvovaginal candidiasis and yet vulvovaginitis is the most common reason for a woman to visit her doctor (Hatch, 1992, 904-906). Infection by the candida species follows bacterial vaginosis as the most common cause of vulvovaginitis (Hatch, 1992, 904-906). A report in the journal Current Opinion in Obstetrics and Gynaecology states that "the incidence of nonalbicans candidiasis has increased sharply in the past few decades" (Hatch, 904). Given that the incidence of Candida albicans in the female population at any one time is about 21% (Ginter, 1992, 177-180), and that pregnancy is a predisposing factor, we can surmise that the remaining cases have largely grown over the last thirty years as a result of increasing cases of diabetes, and the advent of the contraceptive pill, hormone replacement therapy, antibiotics and immunosuppressive drugs such as cortisone. For many women the cause of infection is not clear end current medical speculation is that the infection survives because of immunosuppression in the woman's body. Much of the research into the immune responses of AIDS patients may help us to find an answer to this question. Similarly, research into the alarming increase in early childhood diabetes which is not genetically linked, may be helpful. Exogenous factors such as hypersensitivity to yeasts and moulds, pollens and chemical pollution are beginning to influence a small number of doctors to try de-sensitising treatments, something which homeopaths and naturopaths have known about for some years
Candidiasis is not a disease which is only found in women and can attack many body organs, especially those with a mucous lining such as the ears, sinuses, throat and oesophagus. It can be a causative factor in arthritis and be a deadly side-effect of in-dwelling catheters, open-heart surgery and intensive care wards, especially those for new-borns. Systemic candidiasis is the colonisation of the intestines by one or more yeasts. The yeasts and/or fungi attack the host organisms and, to continue the battle, metaphors which medical research employs objectify these organisms and take control of an environment which has had its defense mechanisms previously knocked out; that is, its immune system has been suppressed. The colonisers are now able to cause such diverse symptoms as: headaches, painfully distended stomachs and constipation, flatulence, haemorrhoids, urinary tract infections, sinusitis, post-nasal drip, urticaria and skin rashes, dizziness, anxiety attacks, ear ache, vulvovaginitis, prostatitis, fatigue and depression. Left unchecked, systemic candidiasis can lead to chronic fatigue syndrome.
One of the most difficult problems with this disease, however, is to get an accurate diagnosis. Present culturing and micrascopic methods do not always give a correct reading and false negatives are common. In some cases the number of organisms present are too few to be detected but can still continue to cause symptoms. While blood tests are available in some parts of the United States, it is difficult to get the specific readings here in Australia. Available in Colorado is the ELISA method which has a sensitivity of greater than 90% and is used to quantitate serum levels of IgG, IgA and IgM specific for candida cytoplasmatic antigen (de Schepper, 1991, 79).
Opinion about the origin of the infection in women is fairly equally divided between the vagina as the originary site (Ginter, 177) and other bodily orifices through which the candida becomes systemic and presents in the vulvovaginal area as a secondary infection (Mendling, 1988, 1). With all these possible origins of a yeast infection, the social and medical attitude that a woman who contracts this disease must be sexually active and therefore punished still persists. Unlike the attitudes of man, members of the public and doctors alike, the Candida organism does not discriminate between prostitutes and virgins. The treatments that have so far been developed have the effect of rendering the woman asexual for up to fourteen days at a time and often do not treat the sexual partner when he or she may be the carrier. Doctors may refuse to prescribe drugs until the test results are known which may take five days if it is over a weekend. Many doctors are reluctant to deal with the issue of changes in sexual practices where the woman is in a relationship and the extra stresses of this situation may make her condition worse. The woman is advised not to have penetrative sex during treatment, although for many women this would be too painful anyway. In effect, the female patient is being punished for her perceived sexual activity.
The feminist aphorism that "the personal is political" is, I believe, particularly significant when a disease which affects women's sexuality is so little discussed and attitudes on the matter are polarized. Indeed, Rosi Braidotti describes the body as "the product of normative effects that situate it directly in the field of politics; as such it is not the body as studied from the point of view of historical, biological or demographic sciences, but rather, the body defined as a political field" (1991, 77).
The title of my paper is taken from a study published in 1972 by Martha Vicinus entitled Suffer and Be Still: Women in the Victorian Age which documented an investigation into the medical and social attitudes towards women in the Victorian Age in Britain. In this text are quoted the words of a popular writer on etiquette, Mrs Ellis, who, when commenting on sexuality in marriage, stated in 1845 that a woman's "highest duty is so often to suffer and be still" (x). Any woman who has suffered from a vaginal infection (and it is medically acknowledged that at least seventy-five per cent will at some time in their lives) (Bykov, 1992, 77-82), knows that keeping still when suffering from a kind of genital torture is nigh on impossible.
One of my roles is to be a patient, but Patient Griselda I am not. The socialized compliance of women to be accepting patients is too often used to ply them with medical treatments which are poorly researched and have dubious outcomes. Drug treatment which has an eighty per cent success rate is considered very good but is of little benefit to the remaining twenty percent. In the latest edition of Derek Llewellyn-Jones' Everywoman. A Gynaecological Guide for Life, which forms bedside reading for a great many women, the problem of vulval itchiness is addressed. This "guide" states that "if any cause is found it needs proper treatment, and the patient cannot hope for instant cure. She must be patient and rely upon her doctor" (1993, 371).
For women with recurrent vaginal candidiasis, that is at least four episodes per year or, for many, before every menstrual period, one, three, five, or ten years is a long time to wait. For the five per cent of all women who suffer from burning vagina syndrome also known as vulvodynia or vulvar vestibulitis (Llewellyn-Jones, 368), constant burning and pain of the vulval region ruins their social and sexual lives and there is no acknowledged cure for this condition. In Australia alone, with a population of seventeen million, this means that there are at least 450,000 women who have been rendered asexual. Not only is penetrative sex too painful but so is masturbation and genital pleasuring.
Medical research is permeated by the language of control. In 1987 when Dr David Page discovered the gene which constitutes a specific DNA sequence on the Y chromosome he called it the "master gene" or testis-determining factor (Butler, 1990, 106). The social conditioning which dictates the masculine as the norm also rampantly determines medical research. This is evident in many tests for the effectiveness of drugs which are carried out each year. In a study carried out on 110 women in Toronto (Fong, 1993,44-46), there was very little difference found between the effectiveness of ketoconazole (Nizoral) taken orally and Clotrimazole (Canesten) used intravaginally. Despite the fact that this study treated half the male partners of the ketoconazole group, no results are supplied. This may indicate that either the male partners did not comply, that the results actually challenged other outcomes, or that the researchers thought that the women provided better objects of analysis. Research carried out in London used the information that candidal infection recurs commonly pre- and perimenstrually to hypothesise that "the endometrium might act as a reservoir for candida, thus infecting the vagina as the endometrium is shed during menstruation" but concluded that "it is not a common reservoir for candida species" (Smith, 1993, 295). Although the reliability of this research is questionable, it remains one of the few recent investigations into hormonal and menstrual factors. A letter from a research team to the British Medical Journal in September 1995 states that "requests for support from the pharmaceutical industry for ... hormonal treatments for recurrent vaginal candidiasis have been unsuccessful" (White and Drake, 629). Further evidence to support a hormonal treatment comes from research by a St. Petersburg team which found that the invasion of fungi caused a thinning of tissues which then became more prone to infection (Bykov, 80-81). Perhaps pharmaceutical companies are all too aware that it is in their interests to maintain a lucrative market for repeated treatments rather than to help fix the problem.
If, on the other hand, Sobel is on the right track with the hypothesis that "recent immunological studies suggest the possibility that an acquired Candida antigen-specific immunological deficiency results in uncontrolled vaginal Candida proliferation and hence repeated clinically evident attacks" (Sober, 1992, 148), then other recent studies which are preoccupied with the sexual behaviours of female patients may be prurient rather than clinically useful (Hellberg, 1995, 575-579; Van Lankveld, 1996, 65-69).
It is likely then that women may be presented with a vaginal infection which is potentially serious not only for their loss of sexual enjoyment but also for their general health. If this is so, then the need for effective treatment is essential. At the moment treatment options have limited success. Some women respond to topical intravaginal pessaries and creams, while others become allergic to them. Some women respond to a range of oral therapies and some find that these treatments offer little improvement. The most commonly prescribed oral capsule, Nystatin, is increasingly ineffective against many Candida strains. Recent research in Poland shows that in 1972 all strains tested were sensitive to Nystatin but in 1992 56.7% were resistant to this drug (Nierebinska, 1992, 427-9; White, 1993, 112-114). Ketoconazole (Nizoral) is known to pose a threat to the liver (de Schepper, 1991, 131). The newest drug, fluconazole (Diflucan), has had mixed responses. For some women it provides quick and easy recovery since one 150mg tablet may be all that is required. It is also used in the treatment of immunosuppressed patients with AIDS, but there is increasing evidence that some candida infections, especially Candida glabrata (White) and Candida krusei (Mikami), are becoming resistant to this drug. For many women one dose is not sufficient and its prohibitive cost becomes a problem. One 150mg tablet of fluconazole costs $30 although half of this is reclaimable on private health insurance. The cost of this treatment is still hugely prohibitive for many women whose health has last priority in the family budget. The government has seen fit to subsidise fluconazole for female AIDS patients but not for female candidiasis sufferers.
From the stories that have been shared with me some alternative treatments have emerged. Some women gain relief from their symptoms by taking a herbal preparation called Yeaststat which is made largely from Pau d'arco, a Brazilian tree bark. Tea tree oil when diluted in a bath or as a douche will relieve burning and itchiness, but will burn the skin if applied neat. Yoghurt applied topically and dilute vinegar or acidophilus douches are also sworn to by many others. However, in order to eradicate the yeast internally a strict yeast-free diet for at least twelve weeks is needed as well as oral therapy or homeopathic desensitizing treatments. Lactobacillus acidophilus, together with extra vitamins c and b, garlic, and zinc and evening primrose oil to boost the immune system, are beginning to relieve some of my symptoms. Regular exercise will also help.
Because so little is known about the causes of this disease and its long-term prognosis, we can only guess at the outcomes for women's bodies. Although individual doctors indicate that they recognize the connection between changes to cellular structures by candida infection and altered, unusual but not pre-malignant Pap smears, no long-term research has been carried out to my knowledge to assess whether there is any link with this infection and cervical cancer. Research by the Bayer pharmaceutical company supports the view that "yeasts harboured by the mother [in pregnancy] are transmitted to the child" and can infect the neonate in the course of vaginal delivery. Their catchcry is that every neonate is regarded as being "entitled to a fungus-free birth canal" (Mendling, 1988, 19). There appears to have been an increase in the number of girls born in the last ten years who suffer from recurrent vaginal irritations. The fact that those daughters will grow up with marred social and sexual lives thirty years after their mothers, and will have to deal with this problem, is particularly disturbing. There is an urgent need for long-term cross-class, cross-racial research which may help the women as well as the children and solve this increasing social problem. If we continue to tell each other stories, we just may subvert the failure of traditional and alternative medicine to talk to each other and of different medical specializations working in hermetically sealed units. Women must continue to question the information that they receive from their doctors and to refuse any longer to suffer and be still.
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