Life after uncontrollable leaking, acrid body smell

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One of the former patients listens as Katengwa responds to a query she raised during the illustration at Kibagabaga Hospital. With Katengwa is Barbara Margolies, the IOWD executive director (L), and Dr Blaise Dushimiyimana. (Donah Mbabazi)

The world came crashing hard on them. The idea that the women would be in a tree shed in Kibagabaga Hospital smiling and laughing freely had gone with the pungent smell that their bodies emitted when that world hit them.

There were no smiles in those days of incontinence; the times when their leaked urine or even stool uncontrollably. Then, the smiles that were evident in the tree shed this time were all written in sad expressions and wrinkles forced by continued facial gloom.

It is 11 am and the women who have experienced the dark side of life when suffering from obstetric fistula are listening to the animated illustration lesson from Immaculée Kantengwa. The midwife uses an illustration flip book to educate the women about pregnancy and avoiding fistula.

The fistula survivors, in turn, would be expected to take the lead in creating awareness about the condition and how sufferers can be accepted.

Obstetric fistula is a severe medical condition when the wall between the bladder and reproductive organ is damaged and a fistula (a hole develops), leaving the patient unable to control flow of urine and sometimes, if the rectal wall is affected, faecal excretion.

Obstetric fistula is mainly caused by prolonged obstructed labour. When a woman stays in labour for longer than 24 hours, she risks suffering from the fistula.

The condition causes untold stigma and rejection by community, families and husbands. Often times, women with the condition are forced out of communities. Their crime? Smelling. They are shunned from jobs and cannot freely socialise with people.

However, like the group of women under the tree in Kibagabaga Hospital during the quest for this story, the condition can be fixed courtesy of a surgery or, in severe cases, attended to in other ways such as by fixing ostomy bags – through which urine can flow – or waterproof panties (for those whose conditions cannot be fixed by the current technology in the country).

The women during this visit are all dry. They have been successfully repaired and returned to be welcomed by their communities and loved ones again. However, once in a while, there stands a man to be counted among the fainthearted. One such man is Jean Bosco Senzoga, husband of Florida Nyirarukundo.

The couple, together with their child, was among the group taking the fistula lesson. Senzoga was Nyirarukundo’s knight in shining armor, stood by her in her darkest moment. When the leaking started in 2012, she thought his world was crumbling. But the thought of deserting his wife was not something he fathomed.

He stood by her until she was operated on in April by a team of visiting medical volunteers from the US under the auspices of the International Organisation for Women and Development (IOWD).

“It was hard dealing with it, we were unhappy and our intimate life severely dented, but deep inside, I knew she needed me most at such a time,” Senzoga told Healthy Times.

He is one of the best examples to offer men a two-pence. He says men must be brave and have faith because fistula is just a condition that can be treated.

From sorrows to smiles

Alphonsine Musabyemariya breaks down when she starts narrating her experience with the obstetric condition. The 41-year-old woman from Rwamagana District suffered fistula in July 2013, and for the next one year, endured rejection and dejection.

“The level of discrimination was stark. It was like I had committed a serious crime against the community I had known for 40 years,” she says.

“My husband, with whom we have three children, shut the doors in my face. I couldn’t work, I was even ashamed of going to social gatherings.”

Musabyemariya underwent a successful fistula surgery in April, and now feels anew.

“I am fine now; I even work and support myself. I can go to church without shame, my family and friends returned to me,” Musabyemariya adds, urging women with the condition not to live in hiding and seek medical help.

Dr Teckle G. Egiziabher, a gynaecologist and fistula surgeon at Rwanda Military Hospital, Kanombe, says fistula victims live an “empty life” because they are treated as outcasts. It is the empathy for such suffering of the woman that Dr Egiziabher took up fistula surgery training to the women regain their lost dignity.

Whispers from communities suggest that with fistula, even hardcore doctors think twice before helping the patients. It is for these reasons that IOWD volunteers and others such as Dr Egiziabher are treated like heroes by Florida Nikuze.

Nikuze confesses she sunk below self-esteem grading when she suffered fistula. She hated herself and wished she were never alive.

That was the kind of life Alphonsine Nyirampakaniye endured for 21 years from 1993 when she suffered the condition. “I couldn’t sleep in the same bed with my husband and eventually we had to separate. I had to singly take care of our four children in that horrible situation,” she says.

The trauma from the disease can have dire consequences. Survivors talk of times when they contemplated suicide to end embarrassment of soiling oneself in public.

Petronillar Tumuhairwe, from Kimironko suburb of Kigali and a previous neighbour of one victims in Matimba, said some of the victims even think of committing suicide. Her neighbour (name withheld) was always sad and detached from people.

“The shame is just too much, and I don’t know if I have the strength to keep on living like this, that’s how that patient always kept on tormenting herself,” Tumuhairwe said.

The ‘big-hearted’

Jim Grinberg, an obstetrician/gynaecologist, says he has been coming to Kibagabaga for the last five years because he felt Rwanda’s need for care.

Dr Aditya Dash, an anaesthesiologist, says the fistula situation is extremely profound.

“Since Rwanda had limited skills, I felt teaching the physicians here would improve their skills and eventually they would be able to care for the patients independently and not need our help in the future,” Dr Dash says.

Dr Joan Blomguist, a urogynecologist, says helping her career is dedicated to treating women. “Ever since we have been coming to Rwanda, I have realised there has been less fistulas; we have already seen a change,” she says.

The IOWD team of volunteers also comprises medical students both from the US and the country. But for these students, it is more than just a study experience.

Arlene Nishimwe, a fifth year medical student at University of Rwanda, started working with the IOWD team last year.

“I didn’t know much about fistula, so I was interested in knowing more about it and seeing these women in such pain caught my attention. We help the team with translation, we do the consultation, it’s like we are the go-between the US doctors and these patients. We are taught a lot of things and even how to do surgery,” Nishimwe says.

WHAT THEY SAY

Alphonsine Nyirampakaniye, former fistula sufferer from Kayonza District.

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Alphonsine Nyirampakaniye

‘I couldn’t sleep like others at night. My husband and I couldn’t sleep in the same bed and eventually we had to separate. I singly took care of our four children in that horrible situation… for 21 years. It is unbelievable, but I am happy to be free from frequent hospital visits.’

Florida Nikuze, former fistula sufferer.

‘I hated myself because I couldn’t fit in society. My family got fed up with me and I was abandoned. Society is harsh on the downtrodden but there are people like IOWD who will always help.’

Jean Bosco Senzoga, husband of former fistula sufferer.

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Jean Bosco Senzoga

‘It was hard dealing with it. Our home was like a funeral parlour due to constant gloom and money also became an issue since I was then the only one working to support our family. There was nothing like intimacy in our love life, but I had to be with my wife because she needed my support more than ever.’

Alphonsine Musabyemariya, former fistula suffer from Rwamagana District.

‘I was neglected by everyone and discriminated against. My husband with whom we have three children closed doors on me. I couldn’t work, I was even ashamed of going to social gatherings, afraid of what people might think. I am fine now even able to work and support myself. I can go to church without shame, my family and friends came back to me, basically life feels normal again.’

Thereza Nyiramugasa, from Nyamagabe.

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Thereza Nyiramugasa

‘I got fistula in 1991 and endured a life starving myself and not drinking to reduce the urine but it didn’t work. I couldnt work, even my husband left and I was isolated, but now I praise God I am fine after the surgery in April.’

Leticia Musanabera, from Musanze District.

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Leticia Musanabera

‘I suffered fistula in September 2000. My family and friends left; I had to take care of four children, but after the surgery, I feel like a woman again and the community has embraced me.’