Uterine prolapse community information session: An affirmation of faith

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At first glance it seemed an unlikely location for a community information session. An hour by motorcycle from Butwal and then another ten minutes from the main highway over a bumpy dirt road, the building was of a simple wood construction. The bottom level was open on two sides: two water buffaloes rested in the back among stacks of hay; a goat was tied to one of the front beams.

A basic set of wooden steps led to the top floor, which was a simple loft enclosed by three walls and a slanting roof. A man was busy laying out mats on the floorboards. He disappeared and came back a few minutes later bearing a TV and a tangle of electric cords. In the loft above the cattle shed he set up the TV and the DVD player (carefully preserved in its original box) to prepare for the upcoming information session.

Downstairs a group of young girls sat around a table fanning themselves from the hundred degree plus heat. They were the social mobilizers sent by the Opportunity Development Council, a local NGO that was sponsoring the session. Nandu and I took our seats with the girls and took turns fanning each other as we waited for people to arrive.

We were in Baluwa village, just down the road from Nandu’s home village. When I met Nandu several weeks ago in Butwal I had been working with her roommate, Deepa, on a community radio feature about uterine prolapse. Nandu, who had once been a community volunteer with Deepa in an international NGO, took interest in the issue and decided that she wanted to host an information session about uterine prolapse in her own community. After setting a time for the session and identifying an NGO that Nandu could work with (ODC), I had finally made it back to Butwal. Following a rushed morning of preparations (scratching out lists of symptoms and prevention methods on sheets of white butcher paper) we arrived in Baluwa on the back of motorcycles and waited for Nandu’s audience to arrive.

Despite the incredible mid-day heat, a steady stream of women from the village began to appear. We filed into the loft, where a fan had been added to the rudimentary electrical set up, but which nonetheless felt more like a sauna than an appropriate place for an hour long educational session.

Ultimately seventy five adults squeezed into the loft, with half as many children who had come along for lack of anything better to do on a scorching Saturday in the rural terai. Obligatory introductions were given by one of the young women from the NGO, and Nandu was allowed to begin her information session.

“Pateghar ke ho?”

“What is a uterus?”

It was a tough opening question for a young woman like Nandu to pose to a room full of her neighbors and elders, and to no great surprise she was met with silence and downward stares. Although her voice betrayed a slight nervousness, she repeated the question. Someone raised their hand to explain that a uterus is for holding a baby, and from there the session proceeded with more comfort.

Nandu went through her home-made posters about the definition of a uterus, the definition of uterine prolapse, its symptoms, and the way it is caused. Although the men in the room had self-segregated to the very back of the room and represented a mere quarter of the participants, even they seemed to be interested as Nandu fearlessly detailed a condition that is so frequently treated with silence and taboos.

The session represented an exciting collaboration of grassroots, community level, and national actors. Nandu—a concerned citizen wanting her community to be educated about a major health problem—had spawned the idea for the session and had pursued her connections with local NGOs to identify a partner for the session. The NGO had provided the space for the session and had done some community outreach in the days before the session to guarantee a sufficient turnout. The Uterine Prolapse Alliance, attuned to the session through my connection with Nandu, had provided educational materials: posters describing the risk factors for uterine prolapse and the relationship between gender discrimination and women’s poor health, as well as a video docudrama about uterine prolapse.

After Nandu explained the posters that had been provided by the UPA we popped in the video, roughly translated as “Mirchi’s womb has fallen: What to do?” The half hour video piece was one of the most effective educational materials I have ever seen in practice. Although the audience became fairly squeamish and even giggly when images of real prolapsed uteruses flashed across the scene, they continued to follow the progression of Mirchi’s personal and medical story with keen interest. By the end of the video they had seen Mirchi give birth, suffer a prolapsed uterus from heavy work in the postpartum period, sustain verbal abuse from her mother-in-law, progress from early stage prolapse to advanced stage, experience difficulty walking and doing household work, and ultimately become involved in a community health program that encouraged her and her husband to learn about her condition, share domestic chores, and save money for Mirchi’s ultimate surgery. The drama of the video and the medium seemed perfectly suited to the audience, which followed the lifelike story with a keen interest that may not have shown to a factual presentation given by an individual speaker.

The session would have ended there, but they granted my request to ask some questions while we still had an audience. First I asked how many people in the room knew someone—a friend, neighbor, sister—who had uterine prolapse. One woman volunteered that she had heard of a woman several villages away who had a similar sounding problem, and a few other women piped into to concur that they had heard about this woman as well. I told them the reason that I was asking was because in some areas of Nepal up to 50% of women have prolapse, and I was curious about whether this was the case in this community. They all adamantly shook their heads “no” and said that this was not the case in their community.

I suspect that their insistence reflects a lack of knowledge about the issue and a persistent inclination to keep such personal health matters under wraps. After some discussion amongst the women in Tharu (a local language that I don’t understand), I found out that two more women had revealed that they also suffer from prolapse. One woman, clearly not yet fully empowered to admit the severity of her condition, told us that she only has prolapse when she is sick—an explanation that is not very likely and is probably just an expression of her desire to not admit to having this serious health problem.

I then asked the women how we can prevent uterine prolapse, which prompted a few responses and some general discussion about the importance of going to a doctor and not doing heavy work while pregnant. All of these answers were fine and good, but I was worried about the long term effectiveness of the information session if only women were learning about how to prevent and recognize the severity of uterine prolapse. The few men who had attended the session to begin with had left when I started asking questions, and only two were remaining. When I expressed my desire for the women to share this information with their husbands and brothers so that men too could be educated about the issue, the director of ODC called upon the two remaining men in the room and asked them to stand up. He then forced them to expound upon ways to prevent uterine prolapse, resulting in one older man’s soliloquy on the importance of chore-sharing between men and women and the necessity of allowing women to rest when they are pregnant and in the postpartum period. It was encouraging to see an elder male figure assert the importance of gender equality and women’s health in this context, even if it is only a small step toward male involvement in the issue.

Though the community information session was short and we have no way to evaluate the effects of a one-time session, the surface indicators are encouraging. When we passed out the remaining posters and pamphlets at the end of the session they were snatched up and read curiously by women, men and children alike. And although I suspect that more than two women in the room were suffering from some stage of prolapse, the fact that we encouraged those two to speak up about their condition suggests that it is possible to create an environment in which prolapse can be talked about, prevented, and treated without shame.

Most importantly the session offered importance evidence for the kind of umbrella role that the UPA can play. As a coalition of NGOs working on uterine prolapse policy and programming, one of the UPA’s primary roles is to act as an authoritative and overarching body on uterine prolapse in Nepal. Further, one of the objectives that we have drafted for the UPA campaign is to enable the UPA to act as a capacity-building organization for smaller NGOs in the area of uterine prolapse in Nepal. Seeing ODC’s interaction with the UPA proved that this is indeed a crucial role for the UPA to fill. By providing educational materials (posters and video) the UPA was able to equip Nandu and ODC with the tools that they need to reach a very localized audience. As a subcomponent of that same campaign goal we have proposed that the UPA needs funds to develop an Educational Package (of posters, pamphlets, videos, flip charts, training manuals, etc.) so that they can continue to provide a more thorough and consistent set of materials for NGOs like ODC across Nepal, thereby empowering local institutions to conduct grassroots level awareness campaigns.

It can be challenging to work on the issue of uterine prolapse in Nepal knowing that there are at least 600,000 women across the country who suffer from the condition, and that as of yet the UPA still does not have the funds to make the voices of these women heard and help treat and prevent further suffering. But these visits are what make our strategy sessions and our endless goal-defining efforts more tangible. They allow me to know that several months from now—at a time when I will not even be in Nepal to see the end result of our work—a document will be produced which will clearly state the objectives of the UPA, which will allow the UPA to receive institutional and financial support, which will enable an environment in which government and non-government bodies across Nepal can begin to work in a collaborative and complementary manner for the eradication and prevention of uterine prolapse, which will allow women like the women of Nandu’s village to speak out about their condition and seek an end to their discomfort and shame. It is a long process that we have sketched before us. But we must have faith in its possibility if we are to imagine a day when the women of Baluwa and the women of Nepal will see uterine prolapse as a condition that can be prevented and treated, rather than as a woman’s burden that must be silently suffered.

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Photos

Captive audience
Watching a docudrama video on uterine prolapse entitled "Mirchi's womb has fallen: What to do?"

A woman suffering from UP
At first when I asked if anyone in the room knew of someone who had UP, no one answered. A few minutes later this woman told us that she "occassionally" suffers from UP. Stigma around the condition is high and even this one woman's disclosure can be considered an important step in raising community awareness.

Nandu
Like all good field visits, this one ended in a random unannounced visit to temple. While touring the famous Shiva temple we ran into Nandu's uncle, the baba pictured in the center. He put on his malas (necklaces) especially for the photo.

Comments

[pankaj kumar chaudhary]

uterus prolapsed
i am health worker. doing orgnization.

[aml]

prolapsed uterus
Thank you for this good topic, I was really needed it, so thank for you again And I know more information about this topic , you can found it in this file prolapsed uterus

[sunil]

Prevention is better than cure
Well,i fell very good reading this blog.Really prolapse uterus has become the burden in the reproductive health status of Nepal.We should appreciate the work done by NGO and INGO in this field.But waht is lack is the major preventive startegy like physical therapy.Prescribing only kegal exercise doesnt hold that much of importance untill and unless it is synchronised with respiratory and abdominal muscle(transversus abdominis).Kegal exercise has become old and produces only the isometric contractionof pelvic floor rather than the kegal women in nepal seeks tanzberger exercise which is more practicle and task and result oriennted.But it has been very unfortunate that non of the agencies has implemented this sort of strategy.Being a physical therapist what i wamt to suggest is that it would be almost impossible to control the new cases of prolapse uterus untill and unless women who are risk learns to activate or exercise their pelvic floor muscle during the activity of daily living.