"I am alone and isolated": a qualitative study of experiences of women living with genital fistula in Uganda.

BACKGROUND: Globally, 2-3 million women are estimated to have a genital fistula, with an annual incidence of 50,000-100,000 women. Affected women remain silent within their communities, and their experiences often go unnoticed. Our objective was to explore the experiences of Ugandan women living with genital fistulas to understand how their lives were affected and how they coped with the condition. METHODS: We conducted 8 focus group discussions (FGDs) with 56 purposively selected women with a genital fistula seeking treatment at Mulago Hospital, Uganda. Data were transcribed and analysed using qualitative content analysis. RESULTS: Women with a fistula were living a physically changed and challenging life, living socially deprived and isolated, living psychologically stigmatised and depressed, and living marital and sexual lives that were no longer joyful. The women's experiences were full of life changes and coping strategies, and they used both problem- and emotion-focused coping strategies to deal with the challenges. They devised ways to reduce the smell of urine to reduce the stigma, rejection and isolation. While trying to cope, the women found themselves alone and isolated. Women either isolated themselves or were isolated by society, including by close relatives and their husbands. Their sex lives were no longer enjoyable, and generally, women felt a loss of their marital and sexual rights. CONCLUSION: Women with a fistula make adjustments in their lives to cope with the physical, social, psychological and sexual challenges. They use both problem- and emotion-focused coping to minimise their sense of isolation, as well as the rejection and stigma associated with fistula. These findings are essential for counselling patients, families and community members affected by a fistula. In similar contexts, health programmes should go beyond fistula closure and target communities and families to reduce the stigma and isolation faced by women with genital fistula.

Female genital mutilation in Sierra Leone: who are the decision makers?

The objectives of this study were to identify decision makers for FGM and determine whether medicalization takes place in Sierra Leone. Structured interviews were conducted with 310 randomly selected girls between 10 and 20 years in Bombali and Port Loko Districts in Northern Sierra Leone. The average age of the girls in this sample was 14 years, 61% had undergone FGM at an average age of 7.7 years (range 1-18). Generally, decisions to perform FGM were made by women, but father was mentioned as the one who decided by 28% of the respondents. The traditional excisors (Soweis) performed 80% of all operations, health professionals 13%, and traditional birth attendants 6%. Men may play a more important role in the decision making process in relation to FGM than previously known. Authorities and health professionals' associations need to consider how to prevent further medicalization of the practice.

Female genital mutilation among antenatal care and contraceptive advice attendees in Sweden.

OBJECTIVE: To explore knowledge of, attitudes toward and practice of female genital mutilation (FGM) among women originally from countries where FGM is customary attending antenatal care and contraceptive advice in Sweden. METHODS: Women in reproductive age living in Sweden who originate from countries where FGM is practiced coming for antenatal care or contraceptive advice at two maternity welfare centers in Stockholm were asked to participate. Interview administered questionnaires and gynecological examination were used for data collection. The data were analyzed by descriptive statistics. RESULTS: Out of 49 women asked, 40 women agreed to participate, of whom 37 had undergone FGM. Most FGM operations had been performed by doctors or midwives. Half of the Muslim women said FGM was allowed by their religion. All women reporting to have undergone 'sunna', an allegedly mild form, had extensive damage to their genitals. At gynecological examination three cases of reinfibulation were detected, of which two had been performed after delivery in Sweden. Twenty-nine women had daughters and three had let their daughters undergo FGM, all of them before settling in Sweden. Problems related to delivery and sexual intercourse were the most commonly mentioned complications of FGM. CONCLUSIONS: The reliability of the self-reported form of FGM is low, which may have implications for research, interventions and health care. Although many women express negative attitudes toward FGM and know about serious complications, the religious justifications, the practice of FGM on daughters, reinfibulation on adults and medicalization of the practice indicate attitudes that favor of the continued practice of FGM.

Primary infertility after genital mutilation in girlhood in Sudan: a case-control study.

BACKGROUND: In theory, infections that arise after female genital mutilation (FGM) in childhood might ascend to the internal genitalia, causing inflammation and scarring and subsequent tubal-factor infertility. Our aim was to investigate this possible association between FGM and primary infertility. METHODS: We did a hospital-based case-control study in Khartoum, Sudan, to which we enrolled women (n=99) with primary infertility not caused by hormonal or iatrogenic factors (previous abdominal surgery), or the result of male-factor infertility. These women underwent diagnostic laparoscopy. Our controls were primigravidae women (n=180) recruited from antenatal care. We used exact conditional logistic regression, stratifying for age and controlling for socioeconomic status, level of education, gonorrhoea, and chlamydia, to compare these groups with respect to FGM. FINDINGS: Of the 99 infertile women examined, 48 had adnexal pathology indicative of previous inflammation. After controlling for covariates, these women had a significantly higher risk than controls of having undergone the most extensive form of FGM, involving the labia majora (odds ratio 4.69, 95% CI 1.49-19.7). Among women with primary infertility, both those with tubal pathology and those with normal laparoscopy findings were at a higher risk than controls of extensive FGM, both with borderline significance (p=0.054 and p=0.055, respectively). The anatomical extent of FGM, rather than whether or not the vulva had been sutured or closed, was associated with primary infertility. INTERPRETATION: Our findings indicate a positive association between the anatomical extent of FGM and primary infertility. Laparoscopic postinflammatory adnexal changes are not the only explanation for this association, since cases without such pathology were also affected. The association between FGM and primary infertility is highly relevant for preventive work against this ancient practice.

Urogenital complications among girls with genital mutilation: a hospital-based study in Khartoum.

To explore paediatric complications of female genital mutilation (FGM), 255 consecutive girls aged 4-9 years presenting to an emergency ward in Sudan were included in this clinical study. Full examination, including inspection of genitalia, was performed. Dipsticks for nitrite and leucocytes were used to diagnose suspected urinary tract infection (UTI). Girls with a form of FGM narrowing vulva had significantly more UTI than others, and among girls below the age of seven there was a significant association between FGM and UTI. Only 8% of girls diagnosed as having UTI reported urogenital symptoms. In spite of the fact that 73% of the girls subjected to FGM were reported to have been bedridden for one week or more after the operation, only 10% stated immediate complications. We conclude that FGM contributes significantly to morbidity among girls, a large share of which does not come to medical attention.

[Genital mutilation of children is an offence. Do health services have a sufficient knowledge to see the problem?]. / Könsstympning av barn är ett övergrepp. Har hälso- och sjukvården tillräcklig kunskap för att se problemet?

There are contradicting opinions whether female genital cutting (FGC) takes place in Sweden. The results from several studies indicate, however, that FGC is practiced on girls residing in Sweden. Almost no research has been done on girls on how they are affected by FGC. Thus there is no scientifically based knowledge on signs and symptoms in girls related to the practice, which can lead to cases passing unnoticed. Many health professionals feel they have poor knowledge about FGC. It is important to teach about FGC at medical and nursing schools and to make guidelines based on paediatric aspects of FGC.

Risk factors for obstetric fistula in Western Uganda: a case control study.

INTRODUCTION: Two million women worldwide are living with genital fistula with an annual incidence of 50,000-100,000 women. Risk factors for obstetric fistula are context bound. Studies from other countries show variation in the risk factors for obstetric fistula. This study was conducted to identify risk factors for obstetric fistula in western Ugandan context. METHODS: A case control study comparing background factors of women with obstetric fistula (cases) and women without fistula (controls) was conducted in western Uganda. Data was collected using face-to-face interviews. Univariate, bivariate and multivariate analysis was conducted using Stata 12. RESULTS: Altogether, 420 respondents (140 cases and 280 controls) participated in the study. Duration of labour was used to form the product terms when assessing for interaction and confounding since it was one the most significant factors at bivariate level with a narrow confidence interval and was hence considered the main predictor. After adjusting for interaction and confounding, significant risk factors associated with development of obstetric fistula in western Uganda were: Caesarean section (adjusted odds ratio [AOR] = 13.30, 95% CI = 6.74-26.39), respondent height of 150 cm or less (AOR = 2.63, 95% CI = 1.35-5.26), baby weight of 3.5 kg or more (AOR = 1.52, 95% CI = 1.15-1.99), prolonged labour (AOR = 1.06, 95% CI = 1.04-1.08. A quarter of the fistulas had resulted from iatrogenic complication during caesarean section. Compared to no education, post primary level of education was protective against obstetric fistula (AOR = 0.31, 95% CI = 0.13-0.72) and there was no difference between respondents without education and those with primary level education. CONCLUSIONS: Surgeons contribute to a big proportion (25%) of fistula cases hence caesarean section being a risk factor in this region. Other risk factors include; prolonged labour, weight of the baby of 3.5 kg or more, respondent height of 150 cm or less (short stature), and low or no education are risk factors for obstetric fistula in western Ugandan.

Female genital mutilation in sierra leone: forms, reliability of reported status, and accuracy of related demographic and health survey questions.

Objective. To determine forms of female genital mutilation (FGM), assess consistency between self-reported and observed FGM status, and assess the accuracy of Demographic and Health Surveys (DHS) FGM questions in Sierra Leone. Methods. This cross-sectional study, conducted between October 2010 and April 2012, enrolled 558 females aged 12-47 from eleven antenatal clinics in northeast Sierra Leone. Data on demography, FGM status, and self-reported anatomical descriptions were collected. Genital inspection confirmed the occurrence and extent of cutting. Results. All participants reported FGM status; 4 refused genital inspection. Using the WHO classification of FGM, 31.7% had type Ib; 64.1% type IIb; and 4.2% type IIc. There was a high level of agreement between reported and observed FGM prevalence (81.2% and 81.4%, resp.). There was no correlation between DHS FGM responses and anatomic extent of cutting, as 2.7% reported pricking; 87.1% flesh removal; and 1.1% that genitalia was sewn closed. Conclusion. Types I and II are the main forms of FGM, with labia majora alterations in almost 5% of cases. Self-reports on FGM status could serve as a proxy measurement for FGM prevalence but not for FGM type. The DHS FGM questions are inaccurate for determining cutting extent.

Health complications of female genital mutilation in Sierra Leone.

UNLABELLED: Sierra Leone has one of the highest rates of female genital mutilation (FGM) in the world, and yet little is known about the health consequences of the practice. PURPOSE: To explore whether and what kind of FGM-related health complications girls and women in Sierra Leone experience, and to elucidate their health care-seeking behaviors. PATIENTS AND METHODS: A feasibility study was conducted to test and refine questionnaires and methods used for this study. Thereafter, a cross-section of girls and women (n = 258) attending antenatal care and Well Women Clinics in Bo Town, Bo District, in the southern region and in Makeni Town, Bombali District, in the northern region of Sierra Leone were randomly selected. Participants answered interview-administrated pretested structured questionnaires with open- ended-questions, administrated by trained female personnel. RESULTS: All respondents had undergone FGM, most between 10 and 14 years of age. Complications were reported by 218 respondents (84.5%), the most common ones being excessive bleeding, delay in or incomplete healing, and tenderness. Fever was significantly more often reported by girls who had undergone FGM before 10 years of age compared with those who had undergone the procedure later. Out of those who reported complications, 187 (85.8%) sought treatment, with 89 of them visiting a traditional healer, 75 a Sowei (traditional circumciser), and 16 a health professional. CONCLUSION: The high prevalence rate of FGM and the proportion of medical complications show that FGM is a matter for public health concern in Sierra Leone. Girls who undergo FGM before 10 years of age seem to be more vulnerable to serious complications than those who are older at the time of FGM. It is important that health care personnel are aware of, and look for possible complications from FGM, and encourage girls and women to seek medical care for their problems.

Genital mutilation of girls.

Female genital mutilation is a traditional practice affecting girls when their genitals are cut for social, cultural or other non-medical reasons. It is estimated that 3 million girls undergo the procedure every year, mainly in areas in Africa and Asia where it is traditionally practised, but owing to migration patterns, girls living in other parts of the world are also at risk. This article describes the practice of female genital mutilation in a changing world and outlines some aspects in relation to female genital mutilation in girls and women that health staff, teachers, social workers and others should pay attention to. Knowledge regarding complications is important for healthcare, but when complications have been used as arguments against the practice this has had limited effect. Information regarding health risks has to be integrated into culturally sensitive approaches based on human rights and improving the situation for girls and women in order to reach a point where genital mutilation of girls will be generally abandoned.

Reliability of self reported form of female genital mutilation and WHO classification: cross sectional study.

OBJECTIVE: To assess the reliability of self reported form of female genital mutilation (FGM) and to compare the extent of cutting verified by clinical examination with the corresponding World Health Organization classification. DESIGN: Cross sectional study. SETTINGS: One paediatric hospital and one gynaecological outpatient clinic in Khartoum, Sudan, 2003-4. PARTICIPANTS: 255 girls aged 4-9 and 282 women aged 17-35. MAIN OUTCOME MEASURES: The women's reports of FGMthe actual anatomical extent of the mutilation, and the corresponding types according to the WHO classification. RESULTS: All girls and women reported to have undergone FGM had this verified by genital inspection. None of those who said they had not undergone FGM were found to have it. Many said to have undergone "sunna circumcision" (excision of prepuce and part or all of clitoris, equivalent to WHO type I) had a form of FGM extending beyond the clitoris (10/23 (43%) girls and 20/35 (57%) women). Of those who said they had undergone this form, nine girls (39%) and 19 women (54%) actually had WHO type III (infibulation and excision of part or all of external genitalia). The anatomical extent of forms classified as WHO type III varies widely. In 12/32 girls (38%) and 27/245 women (11%) classified as having WHO type III, the labia majora were not involved. Thus there is a substantial overlap, in an anatomical sense, between WHO types II and III. CONCLUSION: The reliability of reported form of FGM is low. There is considerable under-reporting of the extent. The WHO classification fails to relate the defined forms to the severity of the operation. It is important to be aware of these aspects in the conduct and interpretation of epidemiological and clinical studies. WHO should revise its classification.

Prevalence and determinants of the practice of genital mutilation of girls in Khartoum, Sudan.

BACKGROUND: Female genital mutilation (FGM) is widely practised in Sudan, despite many decades of attempts to prevent it. AIMS: To estimate the prevalence of FGM, identify the types performed in Khartoum and investigate whether FGM is associated with various social factors. METHODS: Girls aged 4-9 years (n=255) presenting to a paediatric emergency ward were recruited. A detailed history was obtained and full examination, including inspection of the genitalia, was performed to verify the type and extent of FGM. RESULTS: Twenty per cent of the study group had undergone FGM, 50% of guardians indicated that it would be done later, and 29% stated that the child would not undergo FGM. In 66% of those who had undergone FGM, it was WHO type III. All operations had been performed by health professionals, mainly midwives. Those who had allowed or intended to allow their daughters to undergo FGM were of significantly lower socio-economic status (p=0.0008) and had spent significantly fewer years in school (both mothers, p=0.0015, and fathers, p=0.0266) than those who had not/would not. All who had undergone FGM were Muslims. None of the 16 Christians had undergone FGM. In girls over 7 years of age, there was a higher risk of having FGM in those who attended school than in those who did not. CONCLUSION: FGM is still practised widely in Khartoum and probably in many parts of northern Sudan and the type undertaken is often the most severe. Parental education, socio-economic level and religion are important determinants of the practice, but social pressure on parents and girls seems to play an important role.