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Fistula, a Triple Tragedy: The Scourge Destroying Women’s Lives and Dignity

My recent visit to the anti-natal care -Outpatient Clinic in Mulago National Referral Hospital was so revealing. I purposely wanted to know more about fistula and its management. Over 25 women (some where fistula patients) sat on a queue waiting to see the gynecologist. I picked a conversation with Sarah Amongin; a 21-year-old fistula patient from Pallisa district. Amongin was here to seek treatment for a fistula injury she sustained in 2010. “This was my first pregnancy, I labored for two days and when I was rushed to Mbale hospital I had a caesarean section/birth, unfortunately the baby was already dead and they also removed my uterus which was completely ruptured,” she emotionally told me with a haggard look in her eyes. “I was told that I can never be able to bear children anymore. It was after they removed the catheter that I realized that I was leaking urine and feces.” Sarah suffered a triple tragedy; she lost her baby, her dignity, and also her economic independence. She had to leave her job as a shop attendant since it was so inconveniencing to be around people. Sarah’s husband could not bear the smell any-more; he abandoned her and married another wife. Though fistula has been eradicated in countries where quality obstetric care is available, in Uganda it is an all-too-common result of the health risks of childbirth.

Obstetric fistula is a condition that very few people know about. A fistula is an abnormal hole , after prolonged and obstructed labor, between a woman’s birth canal and bladder and/or rectum that causes her to leak urine and/or faeces uncontrollably. Most fistulas are caused by childbirth lasting more than 24 hours. The pressure of the baby’s head can injure the tissue in the birth canal creating a hole between the birth canal and the bladder or rectum. The hole in the birth canal causes continuous and uncontrollable leakage of urine, faeces or both. Fistula can also be caused by violent rape or other forms of sexual violence. The woman is left with chronic incontinence and, in most cases, a stillborn baby. The smell of leaking urine or feces or both is constant and humiliating, and survivors often face social seclusion and abandonment. Left untreated, fistula can lead to chronic medical problems, such as ulcers, kidney disease, and nerve damage in the legs thus disability.

Worldwide, 3.5 million women are reported to be living with a fistula condition. In sub-Saharan Africa alone, between 30,000 and 130,000 of women giving birth develop fistula each year (UNFPA). In Uganda, the maternal mortality ratio is as high as 435 per 100,000 live births, and a woman has a one in 18 lifetime risk of dying from complications from childbirth. In comparison, this figure falls to one in 2,400 in Europe. The United Nations Population Fund (UNFPA) estimates that for each woman who dies in childbirth, 15-30 more who survive are seriously impaired and disabled from childbirth-related complications, such as fistula, in less-developed countries.

Statistics from the World Health Organisation also show that obstructed labour occurs in an estimated five percent of live births and accounts for 8 percent of maternal deaths worldwide. It is estimated that more than 2 million young women live with untreated fistula in sub-Saharan Africa and Asia. It should be noted that the available statistics may be lower than the real numbers since the affected women tend to live in fear, stigmatization, silence and isolation. With access to skilled maternal care, such labour can be predicted, identified and treated. The persistence of fistula is an indication that health social systems are failing to meet the needs of women during pregnancy and delivery.
There are several reasons why fistula remains a threat to so many women worldwide. The first is simply a lack of quality obstetric care. The vast majority of these women live in resource-poor countries like Uganda, and tragically, nearly all of these injuries could have been avoided if timely and competent obstetric care was available, accessible, and affordable. In Uganda, where about 2.6 percent of women of reproductive age have experienced obstetric fistula (every one in 40 women); with more women in rural areas reporting fistula as compared to those in urban areas (UBOS, 2006); this means about 200,000 women are living with the condition with about 1,900 new cases annually, yet less than 3 percent have sought care. Whereas an accumulated 4,337 fistula cases that have reported to a health facility are still waiting for repairs in Uganda, only 1,500 fistula patients get a surgery every year. It is worth noting that only 59 percent of women in Uganda give birth with assistance of a trained health worker, compared to over 99 percent of women in the U.S. who have a trained attendant present. Without maternal care, when emergencies develop, women suffer severe consequences. Adolescent girls are particularly at risk for obstetric fistula and face a risk of maternal death two to five times greater than that faced by women in their twenties. There is evidence that delaying pregnancy until after adolescence may reduce the risk of obstructed labour and obstetric fistula. Sixteen million adolescent girls give birth each year, with almost 95 percent of those births occurring in developing countries.

Ahmed Obaid (former Executive Director, UNFPA) once remarked “Obstetric fistula is a double sorrow because women lose their babies and also their dignity.” These women live in shame, isolation and embarrassment that they are unable to control their bodily functions, they are constantly soiled, wet, and they smell. Their pain and humiliation may further be complicated by recurring infections, infertility, and damage to their vaginal tissue that makes sexual activity impossible and may lead to paralysis.

These women are often rejected by their husbands and excluded by their families and communities and usually live in abject poverty. In addition to causing physical torment and social exclusion, fistula has a third devastating effect; economic disaster. Fistula victims are blamed by society for their condition, and, unable to earn a living, fall deeper into poverty and hopelessness. Many of these women are ignorant that the condition can be repaired, and their shame is compounded by the common misconception that fistula is caused by witchcraft. Marginalized and shunned by society, the voices of women with fistula are rarely heard and less reported. The victims live a life of depression, because they believe fistula is incurable.

In a discussion with Honorable Sylvia Ssenabulya Nabidde - Woman Member of Parliament for Mityana (also Chairperson Network of African Women Ministers and Parliamentarians- Uganda Chapter and also Champion for Population and Development), she recognized that fistula is a silent predicament that develops because of either a delay in deciding to seek care caused by community or socio-cultural factors, by being unaware of the need for care, or warning signs of problems; a delay in reaching a health-care facility, perhaps because of transport problems, distance or cost; and a delay in receiving adequate care at the facility. But also lack of or inadequate knowledge about facilities for fistula repair in this Uganda. Although surgical repair can cure most cases of obstetric fistula, poverty, social stigmatization, widespread misconceptions about the condition, and inadequate access to surgical facilities make treatment a nightmare for most of these women.

“As parliament, we are now advocating and engaging more for interventions to prevent and manage maternal morbidity. Prevention is critical to fistula elimination. Women who have the problem need surgical treatment then post-operative care,” Honorable Sylvia Ssenabulya stressed.

In Uganda, most of the hospitals are unable to repair fistulas because of a lack of surgeons trained in the specialized procedures required. Most fistula victims tend to go from one hospital to another without finding adequate care or even resort to using local traditional medicines and often end up losing hope and get resigned to their fate. In a country with a population of nearly 34 million, only 20 Hospitals and about 40 doctors offer fistula treatment. Hon Sylvia Ssenabulya Nabidde stresses the need to adequately equip and staff designated fistula treatment hospitals with what is required to perform these operations. “As government there is need to prioritize, focus and take on fistula prevention and treatment seriously. Most of the fistula operations conducted are mainly conducted in private hospitals such as Kitovu Hospital in Masaka district and those that are performed in government hospitals are mainly performed by visiting surgeons and this means that they are irregular and sometimes not affordable” She says.

The African Women Ministers and Parliamentarians Network in 2008 observed that cases of obstetric fistula were on the increase due to inadequate political and financial support. The then Chairperson of the network in Uganda, also former Woman Member of Parliament- Kayunga district, Honorable Sarah Nyombi, once expressed concern about fistula treatment that is only available during annual or bi-annual missions of visiting surgical teams. She also articulates that more needs to be done to upgrade health facilities, provide equipment and supplies and team-based training of medical personnel. The doctor population ratio of one to over 24,000 is unacceptably high (WHO).

However, it is not only lack of quality obstetric care that leads to fistula. Other risk factors for fistula have socio-cultural roots. Ugandan communities are still dominated by cultures and norms (social and religious) that increase the risk of obstetric fistula. In Uganda, societies are patriarchal and women usually lack the social power to make choices for themselves about health care and pregnancy. The husband is the one who decides important family matters; even when it is about a woman’s own health. Birthing decisions are often made by the husband or mother-in-law, who may support traditional practices. Socio-cultural beliefs and practices that glorify women who endure labour pains and deliver at home as strong, is a contributing factor. Therefore, lack of empowerment and autonomy affects the time when health care is sought, because women need permission from their husbands, or their in-laws to go to a health facility, which delays emergency care.

Female genital mutilation is one of the harmful traditional practices that increase the risk of fistula. In Uganda, the Sabiny and Pokot are the tribes that practice female genital mutilation although recently outlawed in Uganda. In its different forms, female genital mutilation results in impaired female genital tracts which ultimately endanger the health of the mother including fistula.

Other risk factors for fistula are teenage pregnancy (seventy percent of teenagers in Uganda give birth by age 19); illiteracy; poverty; and living in a conflict or post -conflict zone. While about 90 percent of pregnant women make at least one prenatal visit, only 59 percent births are assisted by a skilled health worker in Uganda, Women still face multiple barriers in accessing adequate care during delivery, including life-saving caesarean sections. Fistula is recognised as a maternal health problem but inadequate skilled health workers as well as lack of equipment, medication, and other supplies is a constraint in providing treatment to fistula victims. With 25 percent of Ugandans living in poverty, many women cannot afford the costs of an emergency caesarean section. Even where fistula repair services are provided, a fistula repair is financially out of reach for many Ugandans: the surgery averages 150 U.S dollars, plus more for transport and upkeep since the repair is not a one-time treatment.

The Ministry of Health identifies three delays in accessing maternal services: at home, to the health facility, and at the health facility. A research conducted by Engender Health on fistula victims reveals that two-thirds of the women faced multiple delays in reaching a facility with the necessary services to enable them to deliver safely. A famous African proverb says it all “A woman in labour should not see the sun rise twice”.

In 2007, the UN General Assembly adopted a resolution supporting efforts to eradicate obstetric fistula. In the Sixty-fifth session on the Advancement of Women, the General Assembly resolution 63/158 highlighted that “obstetric fistula is a devastating childbirth injury that leaves women incontinent and often isolated from their communities. It is a stark example of continued poor maternal and reproductive health services and an indication of high levels of maternal death and disability.” This called for efforts at the international, regional and national levels, including by the United Nations system, to end obstetric fistula. It recommended that efforts to end obstetric fistula be intensified as part of support for the achievement of Millennium Development Goal 5, on improving maternal health, including the strengthening of health-care systems and increasing the levels and predictability of funding.

Fistula in Uganda has come to light in recent years because of the efforts of partners in Reproductive Health especially the United Nations Population Fund, Population Secretariat and Ministry of Health, Engender Health and others working to raise awareness. Reducing maternal morbidity and mortality is a priority of the government, focused on addressing maternity-related care, antenatal and postpartum care, basic and emergency obstetric care, sexual and reproductive health needs of adolescents, and health information and education.

Improving access to timely obstetric care is the most important first step that can be taken to prevent fistula from occurring. Therefore among these priorities are plans to: Increase skilled assistance during delivery, lower the fertility rate, provide adolescents with appropriate, accessible, and affordable health services; reduce maternal mortality; increase modern contraceptive use; and upgrade health centers.

Education is another key step in the effort to end fistula. Scientific studies conducted on fistula show that socioeconomic characteristics of women such as maternal education, socioeconomic status, and place of residence have impact on the risk of fistula. The fact is that education directly improves an individual’s knowledge and ability to process information, regarding healthy pregnancy behaviors. And yet the economic independence of a woman has an effect on her ability to make decision about her health.

Many women and communities are not aware of the causes of fistula and that it is a curable medical condition. Over 70 percent of women can be cured with one operation and can resume an active and fulfilling life. Ms. Demita Nabyobo, the medical Coordinator at Reproductive-Health Uganda, stated “More fistula information through intensive media campaigns should be provided to rural communities, including where treatment can be sought”

Promoting the Village Health Teams in Uganda is crucial since they are first health contact in communities. VHTs provide basic health information to households such as maternal care including ensuring women know about fistula prevention, identify fistula victims and guide them where to go for treatment. The VHT concept is innovative and simple yet communities are able to overcome barriers to healthcare access based solely on their motivation to improve the lives of their people.

However, for the few fistula women who get the opportunity for a new life, it is just a drop in the ocean. As Uganda strives to reduce maternal morbidity and mortality by three quarters, prevention, treatment and rehabilitation of fistula victims should be top priority. Expressions from fistula victims, such as, “I am not dead, but I am not living” are so daunting. With more education and access to quality obstetric treatment, we can help fistula victims emerge from the shadows and live in dignity once more. We can stamp out this devastating yet completely preventable condition.

This article is part of a writing assignment for Voices of Our Future a program of World Pulse that provides rigorous new media and citizen journalism training for grassroots women leaders. World Pulse lifts and unites the voices of women from some of the most unheard regions of the world.

Karimojong Girls (http://www.flickr.com/photos/waltercallens/3735592219/)
Karimojong from http://www.africaimagelibrary.com
Pregnant women take a rest near Kotido town (http://wwww.bigsamphotography.wordpress.com

Comments

amiesissoho's picture

Dear Ikirimat, Thanks for

Dear Ikirimat,

Thanks for this informative piece. Recognizing that early marriage and FGM are contributing factors to fistula is one of the reasons why we have engage our communities to educate them and raise their consciousness on harmful traditional practices. We can still embrace our cultures but we have to also make good critic of them in the best interest of women.

Amie

ikirimat's picture

Thanks Amie

The old saying goes, " It is s/he who likes you that removes the log in your eye". Likewise, it is those who know the harmful traditional practices who should educate and raise awareness in communities about fistula. Together we can do this!!

Amie,Thank you for taking time to read my piece.

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


usha kc's picture

Yeh,, many thanx dear Grace.

Yeh,, many thanx dear Grace. It touches me "I am not dead but I am not living" .
hugs

ikirimat's picture

Good comment

Thank you for reading my article Usha. I too was shocked and astonished when I listened to more stories from fistula victims. A reason fistula should be stopped at once. We can not continue to see fellow women suffering like this.

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


usha kc's picture

Yeh,, many thanx dear Grace

Yeh,, many thanx dear Grace for bringing this issue in this platform. "I am not dead but I am not living" this expression really touched me dear.

hugs

Stella Paul's picture

Admire your dedication

You are so dedicated Grace, to the cause of women's health! Health journalism is only opening up across the world with several organizations now constituting grants and fellowship and I would say that your future is brighter than ever and more promising than ever before. Love and god bless you!

Stella Paul
Twitter: @stellasglobe

ikirimat's picture

You made my Day !!

Hello Stella, your comment to my writeup has made my day!! . I am glad to hear your strong encouraging words. You give me more courage and determination to search for this opportunities in health journalism.

Thanks and kind regards Stella

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


Osai's picture

Dear Grace, Wonderful and

Dear Grace,

Wonderful and very detailed piece. This scourge affects more women than we realise and much more than is reported. Keep up the good work.

Best wishes,
Osai

Twitter: @livingtruely

ikirimat's picture

Thx Osai

Dear Osai,

Yes, these women need more voices to speak up for them. it is even worse that it is mainly affecting women in rural area. Surely we shall continue 'shouting' for women!

Thank you for stopping by to read my article.

regards

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


treasureland's picture

Nice One Sis!

Sis you have well written about this topic, some regions in my country still have high rate of young women suffering from VVF and its really an issue. All hands must be on deck to help stop the incidence of fistula.

CHEERS

Ifesinachi

Hi Treasureland, VVF is really an issue worrying yet little seems to be done. A lot more needs to be done to prevent further cases and give the women already suffering a chance to have their dignity back. It is true young girls are more at risk. We can contribute by giving communities information on what VVF is and how they can avoid being victims.

Thx for being part of a concerned society

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


Ofalla's picture

Powerful!!

Dear Grace Ikirimat,
What a powerful and informative piece you have written. I knew a little about the problems with fistulas, but you brought my awareness to a whole new level. I did not realize how prevalent the condition is, the factor that increase the likelihood of getting a fistula and the small percent of women who are able to get treatment. I am devastated with the thought of all those women leading lonely, unproductive lives in isolation. What a waste! My heart aches with the pain of these women. I know many nations are developing active campaigns to address this issue, but apparently not in Uganda. Keep up your great writing, this is a very impressive piece that can wake many others up to increased awareness and (hopefully) action to address this very distressing issue.
Excellent work!
Ann

ikirimat's picture

Lets keep raising our voices

Dear Ofalla,

Thanks for appreciating my write up . Indeed your analysis is spot on. We share the same concerns and sentiments about these women suffering. It is very distressing to note that good policies and strategies are in place to eradicate/address VVF , but very little is seen to be done. It is my hope that through raising our voices on this distressing issue, actions will be seen to be done to eradicate it.

Lets keep raising our voices

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


amykessel's picture

We need a chorus of voices

Hi Grace,
This piece is thorough, sobering and insightful. Fistula should NOT be occurring in the numbers it is, and as you've pointed out there are several key areas in which intervention must happen in order to bring the numbers down. Behind each type of intervention is a united group of outraged citizens -- women (and men) from all ethnic and socio-economic groups. In order for the stigma to loosen its grip, there needs to be agreement from all sectors that fistula is misunderstood, socially sanctioned, and preventable.

Your voice is heard loud and clear.

Thank you for your amazing and tireless work for your sisters in Uganda and across Africa,
Amy

ikirimat's picture

Moving words

Amy, your words are so moving. It is my hope that more efforts are put in place by more at every level to see fistula become a thing of the past. Thank you for your unwavering support and encouragement.

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


Dear Grace,
What a brave and powerful piece of writing! Your numerous examples of women's words (I am not dead, but I am not living" say it all for so many suffering women. How a global society of 7 billion in the 21st century can allow so many women to live in such conditions is beyond tragic.

Thanks for giving us a view to their reality and giving voice to the women who have no platform to have their voices heard!

Your hammer of persistence is driving closer and closer to success!

Sincerely, Virginia

Virginia Williams, MBA, PCC | Executive Coach and Learning Facilitator

ikirimat's picture

Brilliant

Dear Virginia, Thanks for your brilliant comment, indeed these women have a reason to be heard. In the 21st Century such a tragedy should not exist. Together we can make our voices louder for these suffering women for immediate attention. surely one day fistula will be no more.

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


Celine's picture

Hello Grace Thank you for

Hello Grace

Thank you for educating us on the situation of women with obstetrics fistula in Uganda. Your writing reminds me of one woman who had it in my village when I was growing up. Her own was as a result of careless handling of her private part in a village maternity home where she went to have her baby. She was a very poor woman married to a much older man as a second wife when the first wife did not have boy-children. Women in the village then were taking care of her-- supporting he materially, financially and exonerate her from paying village contributions. I learn she just died last two weeks, after so many years of being in that condition.

Some years back in Nigeria, VVF is very common among young mothers from the northern part, where young girls of 10 - 13 years are given out in marriages to 'big men' in exchange for cows. Recently government of Nigeria passed the Child Rights Act. A section of it prohibits early child marriage and any parent who gives out a young girl to marriage will face prosecution in court. Again so many NGOs are focused on sensitization against the causes of VVF, and some women groups are devoted to giving support to women with VVF. So the issue is gradually dieing down.

Regards,
Celine

ikirimat's picture

Thank you Celine for sharing

Thank you Celine for sharing the Nigeria experience in eradicating VVF. Actually my very first time to know of a person suffering from fistula was during my teenage and this woman had become mentally sick (I suppose it was due to the unbearable condition) . This young woman used to wonder around my secondary school begging for food. Little did I know how grave the condition of VVF was until a few years ago.

It is my hope that much more effort is put by relevant stakeholders (both government and private) to eradicate it in Uganda. Including enforcing the law prohibiting child marriages.

Together we can make the world better.

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


sabitrisanyal's picture

Dear Ikirimat, Thank You for

Dear Ikirimat,
Thank You for sharing this story with us. It was pathetic to find how women die so miserably and in such a unhygenic condition.
It should start with us and we should take a step to prevent this prematured death.

With Warm Regards,

Sabitri

ikirimat's picture

Thanks for taking time to

Thanks for taking time to read and give feed back. I am happy that we (women) are taking it upon ourselves to stop fistula wherever we are. I am sure one day fistula will be no more.

Together we can!!

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


MaDube's picture

Dear Ikirimat

The picture you paint, caused the hairs on the back of my neck to stand. This condition must be horrific for the women who have to endure it and who also bear being rejected by those from whom they need the most support. Our society does not realise the sacrifice and risk that women take when they choose to become mothers. And, when something goes wrong as is the case with fistula, or miscarriage, or a still birth the woman is ostracised instead of being supported. Indeed this world is a rough world for women and all we can do is keep pushing for change in policies, in mindsets and in behavior. Thank you for your effort in making that possible.

Best,

MaDube

ikirimat's picture

Rough world !!

Dear MaDube, your comments even make me continue appreciating the being of a woman and give me more courage and persistence to work for them/us. Thanks so much and together we shall make this world a better place to live.

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


mrbeckbeck's picture

Moving forward

Ikirimat, you've done an excellent job here covering a heart-wrenching topic. I am impressed, as always, at your head-strong attitude for confronting the pressing issues in your community. With all of the statistics in this piece, I can tell that you put in a lot of research time! It is a tragedy that so many women are living in silence, and in the shadows of society... my heart goes out to them, and I hope that many more of them can receive the attention and treatment that they need. Breaking the silence is an important first step, and you've done that here. Great work!

Thank you so much for your courage to speak out and make change happen.
Best,
Scott

Scott Beck
World Pulse Online Community Volunteer

ikirimat's picture

Dear Scott, your comments

Dear Scott, your comments again come as a sigh and encouragement. I appreciate the moment I decided to participate in the VOF programme. Yes it is my hope that my voice on the issues affecting these women and myself will be heard one day. I have pledged my unending voice to these causes.

Thank you for your support

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


Jensine's picture

A Rally Cry!

Dearest Ikirimat -
I congratulate you on an excellent article. Compelling, informative, thorough - ending on a positive solution with your bold voice calling for it strongly. Although your article is packed with facts I would have LOVED to have some of the issues illustrated through a few more personal stories and voices of the women you met and interviewed, to let their voices shine through the piece as well. Too many of the women suffering the double - or triple blow, as you say - are too silent and invisible. Your role as a correspondent can help turn that tide.
Well done!

Jensine Larsen
World Pulse

Thank you for your important article.
I am a videographer and am here now in Jinja, Uganda with American Doctor Sherry Thomas who is donating her time and skill performing free surgeries for women with fistula.
Please see the videos here and help us to educate!!  
http://www.youtube.com/playlist?list=UUeIUUX0w8lFrl2wfJUsmhuQ&feature=

Sandra
We will be here until May 7

Rebecca R's picture

Fistula documentary

Hi Sandra,

I was delighted to read your comment. About to click on the YouTube link but jus wanted to let you know first that your work is appreciated.

Becky

ikirimat's picture

This is great news for me and

This is great news for me and Uganda women. Thank you for for giving Uganda women a great chance to have their dignity back. These are great clips that will enhance my effort in creating awareness about the scourge. Will have a stopover in Kampala, I will be glad to meet you and say hello.

Grace Ikirimat

"It takes the hammer of persistence to drive the nail of success."


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