Unveiling Hidden Struggles and Breaking the Silence of Obstetric Fistula
For six years, I lived in silence with obstetric fistula; hiding leaks, shame, and isolation. From carrying spare clothes to avoiding social life, the struggle was real. By sharing my journey, I hope to break the stigma, raise awareness, and bring light to a condition often kept in the dark.
Understanding Obstetric Fistula
Before delving into my personal journey, it's important to understand that obstetric fistula is not a disease but a condition associated with childbirth. Though third and fourth-degree perineal tears are classified as fistula because of the type of fistula reconstructive surgery there are more serious kinds of fistulas including rectovaginal fistula (RVF) and vesicovaginal fistula (VVF) where one is unable to completely hold urine and/ or stool. I also witnessed during my 24 days in the hospital that there are different types of fistula reconstructive surgeries. That said, however, I had my own share of challenges of living with a third-degree tear.
In one of my next blogs, I will share a guide I did early this year with the World Council of Churches(during my internship with the human rights department as an advanced master's student in their Bossey Ecumenical Institute in Switzerland) to raise awareness about obstetric fistula among member churches.
Living in Silence
For six long years, I silently bore the burdens of obstetric fistula, never disclosing my condition to anyone, not even family. It was a deeply personal and often isolating struggle. I vividly remember I told my partner that I was going to the hospital for a gynecological-related surgery that morning since I was not sure if I would come back home after the screening and it was my birthday. I chose not to share further details. It was only when my admission was confirmed that I told other family members that I needed their prayers. The friends who called during my hospitalization I told them I had a gynecological issue but didn't delve into specifics. The name of the hospital has a fistula so when someone asked where I was I could just say “Gynacare” and I stayed in a fistula ward. I only gathered the strength to reveal the extent of my condition when I realized that the leaking had finally stopped.
Everyday Challenges
The impact on my daily life constantly haunted me with the fear that urine or stool would leak or that I might pass gas uncontrollably. I often experienced humiliating moments when passing gas while standing or walking, and people would laugh, not realizing that it was not ordinary gas. Some of my most embarrassing days were when stool leaked while I was at work and had to request permission to leave with soiled clothes, subjecting myself to the foul smell on public transport. One of the strategies I adopted was to carry extra underwear, pads, and pantyliners with me, just in case. I endeavored to have long calls in the comfort of my house because I needed access to water for thorough cleaning. Toilet paper alone was never sufficient.
I remember the stark difference I witnessed three days after my surgery when I went to the toilet. I was surprised to find myself clean with just toilet paper, it reminded me of my pre-fistula/ pre-marriage life since I have stayed with fistula most of my married life. Engaging in physical activities, whether sports or simple exercises at the gym, presented challenges. Activities like jumping rope, running, or biking were marred by consistent urine leakage, forcing me to do them in solitude and clean up afterward. I once joined a gym, only to quit soon after, as I found it difficult to explain to the instructor why I couldn't participate in exercises that involved jumping. These limitations also extended to my intimate life, where I became excessively self-conscious. Fears of urine leakage during intimate moments added an emotional burden to an already challenging condition. The impact of living with fistula reached beyond physical challenges, taking a toll on my emotional well-being and my confidence in my own womanhood.
The Hidden Struggle
What's peculiar about fistula is that it doesn't manifest itself visibly if someone is able to deal with the leakage for instance wearing pads, or diapers or using catheters or stoma bags and being clean. But not many women can afford this lifestyle so they isolate themselves from social life. Women begin to disappear from public events most of the time very few follow up on them. For six years, I bore this hidden struggle, one that silently eroded my quality of life until I sought help. From my experience, I have realized there is a lack of awareness of where to get reconstructive surgery because of the fear of the cost involved and few fistula surgeons.
Breaking the Silence
I decided to share my story publicly, breaking the silence that surrounds fistula, to shed light(my middle name Kyeni means light) on this often hidden condition. I also believe in the words of Romans 8:28 "And we know that all things work together for good to them that love God, to them who are the called according to his purpose.” Especially so in this season of my life. In my next blog, I will share how I got a fistula and how I knew where to get help since there are different circumstances in which one can get a fistula.