UGANDA: New day for fistula victims

December 10th 2008

Mothers who have been suffering silently from fistula can get treatment and even have more children, writes Eunice Rukundo.

Imagine losing control over your bowel or bladder movements even just for a week (or even more or less) of your adult life; if urine and/or faeces flowed freely without your notice, regardless of when or where you are; in your bed, at a social function, amongst your friends, everywhere. And just when you have started to beg the Almighty to kill you and spare you the misery, a simple low risk surgical procedure could fix you up as good as new.

It is a scenario almost unimaginable to many; save for those who have lived it and know it happens for even years. At 20 years of age in 1985, Mary Kyomuhangi from Mbarara District started leaking urine after a hard four hours of labour pains that yielded a stillbirth for her first baby. “Everyone about me never ever thought that this could be linked with my hard labour; it was together with the death of my child instantly linked to witchcraft and maybe STIs. With each passing day, I wished for death, convinced it was better than the humiliation and stigma that came with being wet and smelling urine all the time.”

Kyomuhangi lived with this problem for 23 years before she could find any form of relief, which later came in three operations that didn’t even cure the problem completely. However by 2005, she could pad herself and contain the urine flow enough to mingle with people. 23 years of hell was worse than wearing a pad everyday and she says she is grateful for the opportunity to live again.

Yet according to Dr Godfrey Alia, an obstetric gynaecologist at Mulago Hospital, Kyomuhangi is among the unlucky ones whose situation can’t be completely repaired, probably because she sought medical treatment after too long.

Kyomuhangi’s situation is not isolated either in the fact that it exists or in the way it was approached. This debilitating condition where women leak urine and/or faeces is called fistula. And, although it can be corrected with surgery, most victims in this country live with it for decades unaware of the possibility of surgical repair, or without access or means for treatment.

Dr Alia explains that this is mainly due to ignorance of the condition which results in many victims, like Kyomuhangi, treating it like a curse or blaming it on witchcraft and not a medical problem and thus looking for solutions in the wrong places.

“Of course there is also poverty, which is to a greater extent the reason for the ignorance and also makes medication to most women inaccessible,” explains the doctor.

What is fistula?

Fistula is the condition where a woman cannot control the flow of her urine and/or faeces due to an injury on the bladder or the rectum. According to Dr Alia, the commonest form of fistula in this country is that which causes leakage of urine. “This is medically referred to as vesico-vaginal fistula and results from injury on the bladder,” he explains. The form where women leak with faeces is referred to as recto-vaginal fistula, which although existent, is not as prevalent as vesico-vaginal fistula. “There are instances where a woman suffers from both however, as a result of injuring both the bladder and the rectum at the same time,” adds the gynaecologist.

Federesi Nakalyango, from Sembabule District was in labour for two days in 1990 and the traditional birth attendant still couldn’t help her deliver. When she was sent to hospital, it was too late to save her baby. Urine and faeces also started to leak the moment the catheter that was inserted for the operation was removed. “The faeces stopped after two months of hospitalisation but the urine couldn’t,” she says. Lucky for her though, she had by 2005 completely healed after she sought medical assistance and was successfully operated on.

What causes fistula?

Fistula is caused by injury between the bladder and the vagina canal or the rectum and the vagina canal. Dr Alia says the commonest cause of these injuries is obstructed labour, which may result from a naturally contracted/narrow pelvis or mal-positioning of the foetus at birth. “Most victims are women who don’t deliver in hospitals where instant intervention can be done or those who don’t attend antenatal services where some of these eventualities are spotted early and prepared for,” adds the doctor.

Dinah Kahara from Mbarara was also producing from a traditional birth attendant’s ( TBA) where after three days of labour that resulted in a stillbirth, she for five days tried to urinate without success. When she did finally urinate, she didn’t stop for the next 21 years until she was operated on in 2005.

The obstetrician explains that during prolonged obstructed labour, the presenting part, usually the head, compresses the soft tissues of the mother’s vagina, bladder and rectum against the maternal pelvic bones. “Without prompt intervention, typically caesarean section, to relieve the obstruction, the foetus is suffocated and the impacted tissues of the mother’s vaginal wall slough off and leave a hole between the vagina and the bladder or between the rectum and vagina,” he adds.

As a result, the woman is left with uncontrollable leaking of urine and/or faeces and a constant and humiliating odour and wetness. Compounding this catastrophic physical trauma in almost all cases, the woman suffers the loss of her baby from the suffocation. Dr Alia explains that there are other situations that could cause the same damage as obstructed labour therefore causing fistula. These include postmenopausal cancers like cervical cancer, injury by gunshots, falls or even surgical operations.

Jane Namuddu, 52, developed fistula after an operation on her fallopian tubes. “After about four days, I went to urinate and something that looked like a plaster came out. The urine never stopped flowing after that moment,” she recounts. Medical tests discovered there was a hole on her bladder, which most likely was caused during the surgery. For 35 years after that, urine never stopped flowing until an operation that corrected her condition.

Who is prone to fistula?

There was a notion that first time younger mothers were the ones that suffered from fistula. A 2007 EngerHealth Research on fistula in Uganda reported that half of the women with fistula had sustained it at 20 years and above, and less than half were on their third or higher pregnancy. The finding reflects that any pregnant woman can experience obstructed labour regardless of age, including those who have had normal deliveries before.

Irene Tindiwegi was for instance 25 years of age and the twin delivery that resulted into fistula was her sixth pregnancy. Kahara was 23 and having her fourth delivery when she developed fistula in 1985.

Basically, fistula randomly picks its victims but you could lessen the risk by having antenatal visits and delivering from health centres. “This way any eventualities can be addressed early before they cause devastating effects,” says Dr Alia.

Where to seek treatment and at what cost?

Fistula can be corrected with a simple low risk surgery, although for some patients it may take more than one operation, or not completely heal. “The success rate also depends a lot on the women. We for instance tell them to have elective deliveries after surgery to avoid labour and not to have sex for at least three months after that. Most of them, either because of social pressure or dominance by men, or simple carelessness don’t adhere so they re-rapture. For some however, the damage is too extensive because they have lived with it for too long and we can only ease it a bit,” explains the obstetrician.

Yet women have suffered with it for ages from as early as 1985, mainly because of unawareness, poverty or no access to treatment. The government only made it a medical priority around 2004, launching an awareness campaign and providing free treatment at referral hospitals to make treatment more accessible. This means the treatment can be got at any referral hospital in this country, which are however still too few to meet the demand for fistula services.

Most Private hospitals offer the surgery too but at fees, not affordable to majority of Ugandan women that suffer fistula. “We used to do the surgery at a fee but now we refer patients to Mulago where it can be done for free since it is too expensive for most Ugandans here; say about Shs3m on for the average two weeks it would take before discharging the patient,” explains Dr Peter Ssekweyama, an obstetrician and gynaecologist at Nsambya Hospital.

The clinical operations manager at IHK, Jackie Nabukeera says the service is offered at a fee, the cost varying from the complexity of the situation and the surgeon performing the surgery. “The fistula situation is increasingly getting better in this country, with less new cases reported and more affected women seeking medical help,” says Dr Alia.

This improvement correlates with the Ministry of Health’s efforts to improve health services which have for instance seen an improvement in the number of women that deliver from hospitals from 38 per cent as per the 2000-2001 demographic reports to 42 per cent in 2006-2007. “There are more health centres in almost all parts of the country and awareness campaigns about some of these issues have intensified. With more women going to antenatal and delivering form hospitals, the rates should continue to improve,” concludes Dr Alia.

Source: Daily Monitor 10 December 2008