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THE CONSPIRACY OF SILENCE

“I laughed so hard that tears rolled down my legs.”

This was the quote that greeted the patients who lay down on the examination bed of my dear attending (senior doctor) at Cleveland Clinic Florida during my fellowship days, written as it was on a sheet of paper that she had so thoughtfully stuck on the ceiling above the bed. It was an attempt to elicit a smile from women whose daily life otherwise was often devastated by a health issue that they were conditioned by societal norms to keep under the wraps; the problem of urine leakage on laughing, coughing, sneezing or any other physical activity. And these were not just underprivileged women from backgrounds that did not accord them the empathy they were entitled to. These were often well-educated, gainfully employed women who carried a secret that they felt the need to be ashamed about.

Urine and bowel leakage are conditions that can be so debilitating that they can turn a woman’s daily life into a constant struggle to find a toilet or be near a toilet. The scant attention accorded to this torture may be pardonable if it wasn’t such a prevalent problem. Unfortunately, one in three women in UK have urine leakage; 33 per cent of women worldwide have undiagnosed obstetric anal sphincter injury during childbirth, a significant proportion of whom go on to suffer from faecal incontinence (leakage).

The numbers in India are not known, but they are unlikely to be any different. They are not known partly because India lags behind in research. The larger reason is the silence around the problem. The veil of secrecy is ironic because these problems are sequelae of one of the most common life events, one that almost all women go through: childbirth. It is a commonly known fact that India fares very poorly in maternal health indicators. However, what is rarely spoken of is that for every woman who dies in childbirth, 20 more suffer from injuries during childbirth that can reduce them to the ultimate state of human wretchedness.

Take the case of an obstetric fistula (formation of a small opening between the vagina and the urinary bladder or between the vagina and rectum), a particularly distressing complication that can result from obstructed labour. It can ruin the life of a young woman, barely 18–23 years old, at the cusp of life as the resultant incontinence of urine or faeces can lead to deep personal shame, abandonment by the husband and family and social ostracism. And this is not the fate of only rural women who do not have access to the best of medical care. Urban India hides stories that can be in equal parts shocking and tragic. And these problems may not manifest immediately after childbirth. Urine and bowel leakage and the other major problem resulting from damage of the pelvic floor support, namely prolapse (bulging down of the pelvic organs) can manifest many years after childbirth, even after the children have grown up and flown the coop.

Childbirth is celebrated. However, problems that arise from it, problems that can make a woman’s life a nightmare, are pushed under the carpet. Why? Because these injuries affect parts of the body which must be kept completely hidden from view and of which women dare not speak from a deeply ingrained sense of modesty. Their misery is thus utter, lonely and complete.

The problem is further compounded by the larger societal issue of lack of access of toilets. 53 per cent of Indian homes overall and 69 per cent of homes in rural India don’t have toilets. Women in rural India postpone defecation and urination until night time so as to be able to complete their ablutions under the cover of darkness. The situation for the urban Indian woman, whether middle class or underprivileged, is also disappointing if not as dire as in rural India. It is astounding how even the national capital region, for all its transformation in last few decades, lags behind severely in offering much needed amenities for women.

Even a few hours out in the city can turn distressing for any woman because of the lack of access to clean toilets. It is not unknown for an urban woman also to postpone urination and defecation and to drink and eat less to facilitate the same. These bad habits developed over time can lead to major health problems. Drinking less water can lead to concentration of urine, especially urinary irritants that can over time irritate the bladder wall and cause a condition called as urgency incontinence, a form of urine leakage caused by a constant ‘urge’ to go to the restroom. Holding urine over time can cause the bladder muscles to become flabby and not contract well and can lead to repeated urinary tract infections. The constant struggle and shame associated with this normal bodily function can lead over time to uncoordinated pelvic floor muscle contraction that can cause difficulty in emptying the bladder and/or in defecation.

In such a scenario, imagine the plight of a woman suffering from bowel and bladder control issues? Imagine the predicament of a woman, whose life is anyways beholden to a toilet because of her health problem, when she is out for work in a city that does not provide any public amenities.

It does not have to be this way. Treatments are available. However, what is needed is for the wall of silence to be breached. It is time that we speak up and take the veil off this burning issue. It is time that women stop accepting these issues as a part of growing old and demand the best possible care. And it is time that we organise ourselves and ask for better public amenities as it is our right.

As a urogynecologist  (a doctor specialising in the treatment of bladder and bowel control problems and prolapse) and the founder of the NGO ARMMAN (www.armman.org) which works in the field of mother and child health, this issue is one that is not only close to my heart but one I am committed to keep in the public domain. I hope this blog becomes a focal point for the same in addition to informing you about common urogynaecological problems and their treatments and discussing simple solutions. I hope this becomes a forum for women where we can discuss this important issue openly, fearlessly and without a false sense of modesty that only works to ensure that we have an inferior quality of life. Remember that the ‘quality of your life matters!”

The author is a urogynaecologist, researcher, social entrepreneur and founder of the Centre for Urogynecology and Pelvic Health (CUP) and ARMMAN