The neglected case of the fallen womb

Hundreds of thousands of women in Nepal live with a prolapsed uterus and nobody cares.

"Sometimes I wish it was an infectious disease", says a frustrated public health activist in Nepal, exasperated by the amount of attention, and consequently funds, that is directed at HIV/AIDS, when the problem of the prolapsed uterus continues to be ignored. In Kathmandu, one can still see the evidence of a high voltage AIDS awareness campaign from last autumn on looming billboards. Not less than NPR 30 million (approximately USD 400,000) was spent during the campaign on bringing the illness into the open. And, while 'Let's-talk-about-AIDS' messages dot the cityscape, utero-vaginal prolapse languishes on the closely typed pages of dusty journals.

Even by conservative estimates, it is thought that hundreds of thousands of women in Nepal suffer from prolapsed uterus, as compared to the 58,000 Nepalis that have tested positive for HIV. But such is the neglect of women with prolapsed uterus that one can only propose general estimates, referring to 'hundreds of thousands' of victims with no pretence of precision, an indicator of the degree of the neglect. On numbers is predicated a response, and without them, the problem remains unquantified and, thereby, untackled. In this disregard for the problem is the story of how Nepal has, along with funds, imported its public health priorities from overseas; in it is an indictment of health policy, NGO behaviour and media.

In the simplest terms, a prolapsed uterus is the condition when the uterus, a curved sack expanding at the top and narrowing towards the bottom, comes out through the vaginal opening. This happens when, due to a multitude of causes, the ligaments from the wall of the stomach cannot support the organ anymore and it falls through, inside out. A textbook case of uterine prolapse is a woman of about 50 years, who has had multiple childbirths, and who usually gives a history of a difficult confinement or of giving birth to large babies. However, in developing countries, it has been found that uterine prolapse affects a much younger population, with girls of as little years as 15 suffering from it.

There are three degrees of prolapse. In the first, the cervix appears at the vaginal opening only when a woman is bearing down. In prolapse of the second degree, the cervix has descended to the vulva. In third-degree prolapse, the cervix protrudes, and in the most severe cases, the entire uterus may extend beyond the vulva. Tragically, because the problem is generally under-appreciated, and the textbook case is not entirely representative, even doctors often fail to identify the condition in the first two stages.

For women, utero-vaginal prolapse is a matter of utmost discomfort, but social conditioning often deters them from seeking medical assistance even if it is available. Commonly, in the rural communities of Nepal, there is no medical support whatsoever; the health post, if at all accessible, is often manned by male attendants. So, the affected woman will usually push the cervix back with her fingers, and continue to work on the fields, carry water and firewood, cook, clean and care, unwittingly worsening the condition.

By the time of third degree prolapse, when the nature of the condition forces its identification, there is nothing to be done for it but surgical removal – unaffordable treatment for the majority of women in that socio-economic category that is particularly vulnerable to uterine prolapse. Thus, an affected woman will often spend the better part of her adult life in unforgiving pain, often bleeding from ulcers, unable on bad days to even walk.

Uterine prolapse may develop for a number of reasons. Apparently any act that stresses the stomach ligaments, especially at times when the female genital and reproductive organs are sensitive – during menstruation and after delivery – may result in the condition. In a predominantly rural society where material resources are scarce, and every unit of labour is precious (the root of the perceived need to have many children), where even the procurement of basics such as water and cooking fuel is the product of hard labour that has traditionally fallen in the domain of women's assignments, the environment is favourable to uterine prolapse.

Additionally, the burdens of patriarchy and feudal relations of production operate on these circumstances to exacerbate the demands on women. Typically, in underdeveloped countries, where most work is done manually, a household cannot spare a woman's labour for any substantial length of time. Thus, women must recover fast from any condition that constrains their output. In rural areas, where the requirements from labour are more physically demanding than in the cities, families cannot afford to let the women 'off-duty' even at the time of childbirth, let alone once every month.

Lifting heavy objects and bearing many children are most frequently attributed as causes of uterine prolapse. But there are others, such as the practice of pressing the woman's stomach to facilitate the expulsion of the placenta after giving birth, and the tying up of the belly to stop it from popping out after delivery, that raise the probability of prolapse. Intercourse before the female genital organs have recovered from delivery (2-3 months) can also cause it. In fact, such is the fragility during that period that even a harsh cough can contribute to the stress.

The poor woman

The powerful HIV/AIDS argument that describes it as an as-yet incurable, potentially fatal, infectious disease, works to the disadvantage of conditions such as uterine prolapse in many ways. So fundamentally flawed are public health strategies in Nepal today that the very characteristics that should work in favour of a campaign to tackle uterine prolapse when afflictions are competing for funds, render it distinctly unattractive.

To begin with, the prolapsed uterus is a 'condition', not an infectious disease that can be tackled with a one-point policy prescription. But, in that there will always be women, and there will always be poor women, and at least for the foreseeable future in Nepal, there will be poor undernourished women engaged in hard labour with scant access to health care, which they cannot at any rate afford in terms of time (travelling, check up, hospital admission) or money (NPR 10,000 for a hysterectomy), its impact is akin to that of an infectious disease. Since it can be cured, in a manner of speaking – either by hysterectomy or by inserting a rubber or polythene ring pessary – implies that investment in improving health access, subsidising treatment costs, sensitising health workers to deviations from the textbook case, will bring returns.

Women are not known to die of uterine prolapse. Instead, they live with backache, abdominal pain, vaginal discharge, stress incontinence, urinary problems, profuse menstrual bleeding, irregular vaginal bleeding, ulcerous sores, and a deteriorated sex life, which becomes a cause for physical pain and marital tension. The globally favoured profile-raising strategy that the AIDS campaign employs would actually benefit women with prolapsed uterus with immediate effect since the lack of awareness is a major barrier in its treatment.

Simple illustrated pamphlets and posters would discourage common mistakes such as bearing down for delivery before the dilation of the cervix, applying pressure on the stomach just after delivery, explaining that the first two degrees are indications of illness not abnormality, and informing the victims of on the existence and correct usage of a pessary.

A pessary, which is a device worn in the vagina to keep the uterus in place, can be used to treat the condition in the early stages. Its insertion is a fairy simple procedure that village health workers, and eventually the women themselves, can handle after a brief training. The follow up requires the pessary to be checked, cleaned and reinserted every few months. It has been recommended that the pessary should cost no more than NPR 30. The Kathmandu NGO, Women's Rehabilitation Centre, usually recognised as WOREC, is a particularly strong supporter of the technology and provides training regularly. It has also been found that traditional herbal medicines and muscular exercises are also useful at early stages.

But as things stand, with the illness and the treatment being grossly underexposed, cases such as that of Bhagwati Devi Nepal are bound to be frequent. A feminist activist and a patient of early stage prolapse from Sindhupalchok district just east of the Kathmandu valley, Bhagwati Devi says that many prominent doctors in Kathmandu did not diagnose her symptoms, such as pain in the lower abdomen and lower back, as uterine prolapse.

Meanwhile, because there is neither data, nor surveillance, the prolapsed uterus has become a scourge that is everywhere but nowhere. The enormous physical and psychological burden it represents goes practically unnoticed in what little public health debate there is in the country. Without data and campaigns, and therefore neither recognition nor public pressure, there are no organisations to provide funds. As a result, even the few NGO groups and activists that showed concern over the condition have almost completely given up the cause. The most potent women's issues in Nepal have been trafficking, property rights and abortion rights; uterine prolapse has been ignored even by professional women's activists.

Notwithstanding such neglect by policy-makers and development agencies alike, thought isolated in their interest, medical practitioners in various parts of Nepal have been documenting the problem. Prof Radha Rana Bhat's study of uterine prolapse cases at a maternity hospital in Kathmandu in 1998-99 showed that over 80 percent of the cases of patients with prolapsed uterus were attributable to heavy work during pregnancy, and malnourishment. Women in Nepal's far western hills, one of the country's least developed areas, show a correspondingly high prevalence of uterine prolapse; the prevalence in the tarai plains is as yet unknown. Most data that are available are based on clinic or hospital records, which give no idea of prevalence rates since only a fraction of affected women ever seek treatment.

The prolapsed uterus affects the poorest of poor women in areas where health facilities are scanty, and it is a problem that women do not talk about. Relationships between women and men in many communities are not such that a wife will bring in even the spouse to share the pain of her condition. In this social situation, there are deterrents other than costs of time and money; in the existing health care system, there has been no attempt to identify and create a way around even the predictable obstacles. Thus, in a society where women from the same household hesitate to discuss the problem amongst themselves, a majority of health posts is staffed mostly by men.

Spread the word

As in most parts of South Asia where too the prolapsed uterus is a problem, in Nepal the veil of silence continues to shroud the issue. Not surprisingly, since no one has stepped forward to help the women, myths about the condition abound. In Sindhupalchok as elsewhere, menfolk profess that they believe that a prolapsed uterus is the natural result of "too much sex", which translates into an indication of promiscuity. This then raises suspicion about the wife's fidelity. Little wonder that women are keen to keep the condition secret, but as a result they never learn that the condition is preventable and treatable; they accept that the pain is part of the unfairness of life.

While it is understandable why the woman sufferer would want to keep silent about her personal condition, the denial in society at large is unconscionable. Not only are development agencies and non-governmental groups guilty of gross neglect in this area, other sectors of responsible society are equally culpable for being unwilling to help raise awareness about this condition, which necessarily requires graphic descriptions about what a prolapsed uterus really is. A photograph showing a fallen womb is absolutely essentially to explain the extent of the tragedy and the challenge of living with the problem, and yet misplaced prudery keeps mainstream publications from carrying such an image. Indeed, nothing but the (what tends to be a shocking) picture of the uterus showing through the vaginal opening can indicate what we are talking about.

It is not for want of trying, but writers of this article have failed to convince the editors of several Kathmandu-based publications to publish a photograph of a prolapsed uterus. The argument that without a picture, people have only a vague idea what the problem is was not persuasive enough. "This would be unacceptable to our readers" was the constant refrain of editors, willing to take refuge behind the public to cover their own lack of sensitivity. "We do not want to look like a medical journal", said one editor, quick to abdicate his responsibilities towards the women of Nepal.

Unfortunately, it is not a case of reluctance of only the press. Numerous donor agencies as well as NGOs working in the field of women's health, and even feminists within such organisations, have refused to support posters carrying pictures of a prolapsed uterus. When you get right down to it, even city-bred liberals are not able to treat an ailment with openness and energy if it concerns genitalia.

From what little work has been done, it has been found that discussing the matter of the prolapsed uterus with couples (the 'couple approach' as it is termed) when talking about the human reproduction system tends to be effective. Those who work in the field insist that the first step must be to prepare an environment where women are able to discuss the problem amongst themselves so that early detection can save the organ itself, and save the woman considerable stress.

A health worker in the Nepal district of Achham, in the deprived western region of Nepal, pointed out a major problem when she said that there was no mention whatsoever of uterine prolapse in the government's women's reproductive health programme. She said, "I am working on this subject purely out of humanitarian impulse. My job does not require me to touch this problem". For public health as well as social institutions to become concerned about this substantial problem, the government must include uterine prolapse treatment in the category of basic services, and provide training to health post workers accordingly.

Finally, the Nepali government has published a handbook on uterine prolapse, with the help of the United Nations Population Fund and the German aid agency GTZ. It is imperative that this manual be made widely and easily available to women's groups as well as community health workers and even human rights activists all over. The fallen womb must be pulled out from under the veil, brought out of the shadows of rural poverty. The silence must be broken.

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Himal Southasian