#BeingWoman: Vivian’s Story

On Saturday, 11th May 2019, Vivian Ogayo Odumbe will turn thirty-seven. She just wants to let loose and dance all night long. Understandably so. The last twenty-six years of her life have been heavy. She has had to learn how to live with life threatening reproductive conditions and still maintain some semblance of sanity and normalcy. Asked how she does it, she shrugs her shoulders and says, “Nothing but the grace of God.” Every day is different, and today, she rises above everything weighing her down to share her story. Superwoman status right there.

Surgery does not scare me anymore. I have had nine so far; three of them caesarean sections and six to deal with my reproductive health issues. I have suffered from Adenomyosis and still dealing with Endometriosis. These two are evil twins.

Endometriosis and adenomyosis are both metaplasia conditions, meaning that the diseased cells will change into the organs in which they invade. In the case of adenomyosis, this causes abnormal uterus cell growth. Due to the similarities, but subtle differences between adenomyosis and endometriosis, adenomyosis is often referred to as the “sister” disease of endometriosis.

Heavy and irregular periods have been a constant since I was 11, in class five, to be precise. We had not even begun learning about adolescence. I am the first born, so no big sister to walk me through the whole experience. My mother and I never had this conversation. To make it worse, sanitary towels were then considered a luxury. So, guess what? I was always staining my dresses because the only other alternatives were tissue paper and old rugged clothes. I often had to tie my sweater around my waist to cover up. The ‘stomach aches’ (later found out they were called cramps), I endured.

Fast forward to Form one, the cramps became worse. I would miss some classes every month because I was in the sick bay getting ‘treatment’ for that and/or severe migraines. The flow was heavy. I really thought it was normal. There was a friend who also suffered the same fate and we would encourage each other during these times. I survived high school, just like I did primary school.

Things that happen in a woman’s body! I cannot explain…

I met my husband while still struggling with my menses. He was so supportive and understanding right from the onset. He has been such a gift. I had been told that my misery would end once the first baby came. Fake news. The pain got worse. Even worse when the second baby came.
Most of the practitioners were pretty much guessing what the problem could be. Some speculated abortions, others hormonal imbalance. I began self-medicating because I knew every time I went into a hospital, I left with progesterone pills or family planning tabs. The pills would reduce the flow significantly, even deal with the pain to some extent. Woe unto you if you stopped taking them. Everything would be restored to factory settings or even escalated. It was like there was no winning.

After my third baby, status quo having been maintained, a colleague suggested I try a gynecologist she believed would give me the proper diagnosis. I remember expressing my frustrations to him (gynae). I was so tired. I was suffering from hypochromia. My skin was so pale.

Hypochromia is a condition that occurs when there is not enough of the pigment that carries oxygen (hemoglobin) in the red blood cells. The most common cause is iron deficiency. In this case, due to heavy prolonged menses.

Numerous tests later, I was finally diagnosed with Diffuse Adenomyosis, the most severe of the three classifications of Adenomyosis.

The other two do not require removal of the uterus.

Hysterectomy…

I was 35 when I decided to have my uterus removed. One would imagine that the decision would probably be slightly easier for me as compared to a woman who has not conceived, carried her baby full term and given birth. On the contrary, I was devastated. It still hurts to date. There are times I regret that decision because I was not done having children, but I was really tired of bleeding. I had been advised that getting pregnant was a risk because I was always bleeding to the point where I was anemic. I had to be on iron supplements every day. At times I would swallow up to ten tablets in one sitting. Hysterectomy was the only way out.

The flow stopped but the pain persisted…

The pain drove me to addiction. I could not live without pain management drugs to the levels of tramadol and morphine injections.

The Endometriosis diagnosis came in 2018. Samples of chocolate cysts (endometrioma) extracted during a surgery were taken to the lab and found to contain endometrial tissues. I was put on hormonal therapy and treatment to try and shrink the tissues, but the pain was insistent. I scoured the internet for information on the condition and in the process, I stumbled on an Endometriosis support group with an international membership. Therein, I found the contacts of an acclaimed doctor in Romania. I contacted him and scheduled an endo excision surgery in February 2019. We are always looking for ways to ease the pain.

Living in constant pain is not funny.

Post surgery in Romania

Workplace…

This year (2019) alone, I have missed at least six weeks at work. I am embarrassed to ask for off days even when I am obviously struggling.
This has been the norm ever since I started working. The soiling was not pretty. When I could not get time off, I perfected the art of layering. I would wear two panties – each with a maxi pad, biker, tights and a trouser. Even so, I would be completely soaked thirty minutes in. I would use up to sixteen pads in a day. During these days I was unable to board matatus as I feared soaking the seats red. I would therefore call a taxi, then place a lesso or scarf and a newspaper to protect the car seat from getting soiled.

Being open and honest really helps. What do you have to lose? I approached the HR and fortunately they did not make a huge fuss. Arrangements were made so I could work from home when need arose.
I am grateful to work in a place where the bosses are very understanding and supportive. Human.

Stigma exists in places of worship, schools and workplaces. The silence is killing us, so I decided I will not be party to mass murder. I consulted with my bosses at work and they consented to my making a presentation to the office staff, about 200 in total. I titled it ‘Silent War.’ I spoke about Endometriosis, Adenomyosis and my experience with both conditions. From the feedback I got, the presentation was both enlightening and shocking.

I crave for more opportunities to create awareness.

Everyone is affected. Women could be victims while men are caregivers to wives, sisters and daughters. I feel like men are often fully on board once they are aware of the situation. Women, on the other hand are something else. Unless they are going through the same thing, they will seize every opportunity to castigate you, consequently raising the stigma bar.

Depression, suicide and hope…

Surgery does not fix everything, more so one’s mental and emotional well-being. The expectation usually is that I will bounce back completely, physically and mentally. That I will make up for lost time and be extra productive. This is the cause of anxiety for many survivors. Just before the Romania trip, I had therapy sessions with a Counseling Psychologist for the first time in my life. The sessions really helped me deal with certain issues. Depression is always hanging around like oxygen. I recently went online and typed ‘How to commit suicide’ on the search bar. I was lonely, in pain and felt like no one understood me. I shared the screenshot with a friend and we talked it out. Living in constant pain of this kind is not something I would wish on my worst enemy. It is difficult, but I choose life everyday just so my boys do not grow up without a mother. They have been through so much, always seeing their mother in pain or bandaged up.

I once found out that my 11-year-old had googled “Can Endometriosis kill someone?” My heart broke to pieces.

Following the endo-excision surgery, I am hopeful of a relatively pain and drug free life for some years. There is no definite cure for endometriosis. It may reccur or relapse in future.

Being Woman is…

…abnormal strength.

That said, women need to support each other. It is unfair when a fellow woman tells you that your pain is all in your mind. Just because our menstrual experiences are different does not mean my pain is not real.

Hear me now! Painful periods are not normal.

PS: More stories in this series here

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#BeingWoman: Wangui’s Story

What a gift it is to grow up in an environment where you can open up to your folks or siblings about the most intimate of things. Yet, in many Kenyan homes, sex education often comes in form of threats, “Do not get pregnant in this house!” And it is the girls who are often on the recieving end.

One can tell by how open Wangui Nderitu is about ‘taboo’ topics that she had a different upbringing. In this fourth episode of the #BeingWoman series, we have a no holds barred conversation about her experience with Bartholin’s Abscess, hormonal imbalance and lessons learnt about womanhood.

Growing up, sex and related topics, including reproductive health, were discussed openly and freely in our house. My sisters and I could go to mum with anything, and I knew my sisters would always be there for their little sister. So it was easy to approach my mum when I got my first yeast infection. It was a few months before my first period. She reassured me that it happens to girls of reproductive age and facilitated treatment.

My first flow made its debut in the second term of my first year in high school, and then disappeared for 8 months. Irregular periods can be bliss. The annoying thing is you always have to have a pad on standby, you never know when the red robot will strike again. In between, I had a series of yeast infections. Those things are the devil. They are so itchy, and there is no discreet way of scratching.

Of normal lumps…

Later that year, I noticed a lump on my right vaginal wall. I did not know what it was, but sitting was so uncomfortable; like sitting on a ball all the time. When touched, it would roll/move. I informed my mum when we went home for the holidays.

Tests were done, and I tested negative for a Urinary Tract Infection (UTI) and Sexually Transmitted Infections (STIs). Next, a session with the gynecologist. I lay warily on the examination table. It was my first time. He examined me and said the lump wasn’t too big. No cause for worry. It was normal in women, especially pregnant women. I knew it wasn’t normal because non of my sisters had it, and I definitely wasn’t pregnant, but he was the doctor, wasn’t he? He prescribed some drugs which shrunk the lump significantly. I could still feel it, but I had been told there was no cause for alarm.

The second period came in March, the following year. It was slightly heavier. Around the same time, the lump grew again, size of an egg. The same doctor said it was normal and prescribed another set of antibiotics. It shrunk. This went on for the next three years. In the process, I got so many infections as the antibiotics messed with the ph levels of the vagina. I was so self-conscious. With every infection, I feared I was emitting an odor. Later, another gynecologist advised me to stop using scented pads. He noted that I was already showing signs of high sensitivity and the scented pads somehow aggravated the infections. Consequently, they became infrequent.

Batho-what?

Two years post high school, we had just wrapped up a performance at a dancing gig when all of a sudden my right foot went numb. Within a few hours, a lot of my right side had slowed down. I couldn’t move. No one understood how I had come from so much vigor on stage to absolute numbness. Some thought I was faking it. Ultimately, my so called friends drove to the Nairobi CBD and dumped me in a taxi to take me home. It was about 2am. Thank God the taxi guy was empathetic. He even questioned if those were really my friends.

I got home safe, but in a lot of pain. Painkillers were not working. It took me a while to narrow down the source of the pain. It turned out that somewhere on my vaginal wall, something was pulsing violently, as if it wanted to pop out of my skin. I survived the night, barely, only to wake up to the realization that it was Sunday. No gynecologist, that we knew of, worked on Sunday.

We called my elder sister and she suggested we contact her gynecologist. He was out of town but upon telling him all that had transpired and how I felt, he said, “If I am not wrong, that’s a Batholin’s Abscess you are describing.”

A part of me was horrified. What was that? What does it mean? Implications? Yet, another part was relieved that what had been normalized for years now had an actual name.

A Bartholin’s abscess is a buildup of pus in one of the Bartholin’s glands. It happens when a cyst forms in the gland and becomes infected.

Bartholin’s glands are two small, pea-shaped glands located on each side of the vaginal opening that secrete fluid to lubricate the vagina.

Mother stepped out to buy the medicine the doctor had prescribed to manage the pain until he came back. When I took a tablet, the pain went from a 10 to 6. I still could not sit down though. I was tempted to take more, but not on mother’s hawk-eyed watch. That was the longest night ever. I didn’t sleep. By 5am, I was at the doctor’s office. Upon examination, he declared that the abscess was minutes away from rupturing. I was immediately wheeled into surgery and the whole thing, now the size of the biggest egg you could find, was drained out – just in the nick of time too.

I later learnt that a rupture would have had dire consequences. In fact, at the same clinic, a lady had been admitted after the abscess burst and caused so much damage to her internal organs, she was due to be flown outside the country for specialized treatment.

An untreated abscess could result in the infection spreading to other areas of the body. If the infection spreads to the blood, it can cause Sepsis, or blood poisoning.

Post surgery care included sitting on warm salty water to minimize risks of infection. I was also instructed to go slow vigorous activities just so the stitches could heal quickly. I obliged, but not for long. My defiant 21 year old self would not sit still. I missed dancing. I went behind my mum’s back and joined my colleagues for a performance at the Chaguo La Teeniz Awards. While on stage, I literally felt the stitches pop. I ran to the bathroom after the performance to assess the damage. Fortunately, there was only slight spotting and the pain was bearable. I took my pain meds and went back home. I was due for check up the next day.

I was relieved when the doctor said I was healing well and encouraged me to keep resting. I was to monitor myself keenly as there were chances of reccurrence.

Three months later, I was out of town for work. When I sat down and felt this familiar ball, I remember thinking, “here we go again!” I called the doctor. Since I was away, he told me to keep a close eye on it and report to his office as soon as I came back. I was to call him incase of any escalation before then.

That night, I was in bed chatting with one of my colleagues when I felt something flow out of me. I flipped the sheet and to my horror there was a light red liquid staring back at me. I panicked and called my doctor who, thankfully, was available to me 24/7. A series of instructions were dished out, including sanitizing the toilet, sitting on it then squeezing out as much as what was left of the liquid as possible. It was not painful, just slightly gagging. In the morning, I went and bought drugs.

It was a batholin’s cyst, not an abscess. Phew! If left undrained, a cyst develops into an abscess.

Almost 1 in every 50 women will experience a Bartholin’s cyst or abscess at some time. Those of childbearing age, particularly those in their 20s, are most at risk.

I did not go back to the doctor’s office. I called him and told him I was honestly tired of all the drugs. I had been taking drugs for so long I just wanted a break. I told God I was not going to have another surgery. The wound eventually healed and for nine years now, there hasn’t been a repeat episode.

I still dread a recurrence because I can so vividly remember that excruciating pain. I would not wish it on anyone. A friend who had the same condition confessed that the pain was so bad, that if there had been a gun next to her, she would have shot herself to make it stop. One can do so much to maintain proper hygiene but who knows what might happen?

Doctors believe that bacteria, such as E. coli, and sexually transmitted diseases (STDs), such as chlamydia or gonorrhea, may cause the infections that can lead to a Bartholin’s abscess.

I was also diagnosed with hormonal imbalance. I react to a good number of antibiotics, which means that chances of getting thrush or an infection are always high. It is what is, so women should not be ashamed. Arm yourself with information and talk to your doctor about taking the necessary precautions.

There is one good thing came out of that season; I became completely attentive to what constitutes normal and abnormal where my vagina is concerned. I do not ignore pain, smell, discoloration or anything out of what I have known to be the norm. My awareness radar is up there with the clouds. This has paid of many times, most recently last year, when I noticed I was cramping non stop, whether or not I was on my menses.

The doctor explained that my uterus had some kind of ulcers, sort of eating it up (for lack of a better term). I was put on drugs that cost about thirty thousand shillings, to be taken over a period of three months.

I get so frustrated when women do not go out of their way to educate themselves about basic reproductive health. Read. Go to the gynecologist at least once a year, and by all means, switch them up till you find the right one.

Men should also check how they talk to their partners and women in general. Majority are insensitive yet they are carriers of some infections that end up tormenting women. A male friend once asked me, “Are you sure you are not dealing with an STI here? Why are you always having these problems?” Maybe if it was framed differently, it would have been interpreted as concern, but it was more accusatory and shaming than anything else.

Being woman is…

…instinct. Poweful instinct. Trust your gut.

I am empowered by what I, a woman, can do. Exploits!

PS: More #BeingWoman stories here

#BeingWoman: Immaculate’s Story

Immaculate has been a straight A student from childhood. She would earn all the ‘best in’ badges and wear them proudly on her chest. As fate would have it she now has to put another one on, probably for the rest of her life, for conditions she would never wish on her worst enemy.

Tears flowed freely during the interview. It was truly touching to see such vulnerability in this era of masked bravado. She wears her heart on her sleeve and attempts to let you into her world of pain, triumph and brevity – a trait carried in her middle name, Edel.

What was it like growing up, you ask? Well, it was mostly ok; but on occasion, I would do a 180 split in the air during a Kati game and win! That would be electric! Everyone would want to be on Imma’s team. Fun times!

Childhood also meant learning to adjust from a life of privilege to one of ‘bare minimum.’ Also, fun times – compared to what teenagehood and adulthood had in store for me, that is.

Whatever you do, DO NOT SNEEZE!

In high school, I served as a church prefect. My job description included supervising altar girls and boys and ensuring the smooth running of services. One day, there was a joint service where other schools in the area joined us for mass. I sat at my usual spot and followed proceedings. I was on my menses but I was not worried. Being the heavy bleeder that I was, I had taken proper precaution to secure all bases; wearing a maxi thick pad that I had changed only 20 minutes prior. I was assured of security, at least till mass ended.

And then I sneezed.

I felt it. A massive blood clot had escaped the uterine prison. Normally, this would have been alarming, but it had been barely 20 minutes since I had worn a fresh pad. I was confident the pad would absorb that whole flood. I was still confident a few minutes later when the priest instructed us to rise for prayers. Unbeknownst to me, I had stained my light blue skirt proper. I remember a girl telling me, “Imma kaa chini, sit down!” Too late, some boys had already seen and were laughing at me. I sat there head bowed, twiddling my fingers until everyone left. By then I was so soaked that the blood was now trickling onto the ground in drops. Someone got me a lab coat and I proceeded to the dorms clean myself.

I am not sure why my periods were never painful. They were indeed heavy, and passing those huge clots should have been painful, but it wasn’t. Maybe it was something in the food; that paraffin they laced our food with maybe? I don’t know. Whatever it was, it stopped working as soon as I graduated high school in 2006. It was as if my periods had also been capped and given the power to torture. During these episodes, the pain would render me immobile.

At some point, someone mentioned fibroids but when I asked my mum if we could go to the hospital, she said, “There is no way you have fibroids. Even I had painful periods. You will be ok.” And that was that. I agreed. I thought it was just normal to have painful periods. So I learnt to live with the pain.

When a painkiller failed even after overdosing, which was many times, I shut my eyes and rocked myself in foetal position till the pain went. My hormones were all over the place too. I was lonely and in pain all through my stay in campus and the years that followed. I did not know how to communicate that to the people around me. I wanted them to figure it out, and got angry when they didn’t. Work was stressful, home wasn’t quite the refuge either and I was in a long-distance relationship.

I was in such a depressive state that when I received news that I had won a scholarship to study in Birmingham, it didn’t excite me one bit. This despite the fact that I had prayed for a break through for three years.

Across oceans, I would look forward to that package from home carrying goodies. Mine were different, hardly any unga, royco or sausages. It was mostly a maxi pads shipment. If or when I ran out of stock, I would be forced to use the maternity pads because the thin ones readily available (to my knowledge then) in the UK did not quite suffice. The flow was really heavy, and the huge chunks of clots had me thinking my liver was disintergrating.

I came back home one and a half years later, a Masters degree in Public Health (distinction) tucked under my arm. The irony was that my health was not exactly tip top.

The dark cloud from when I left the country had not quite lifted. Around the same time, my four year old relationship with my then boyfriend came to a screeching halt. I became a single, depressed young lady. Family and personal issues sometimes had me crying for eight hours straight. Now sprinkle my hormonal imbalance for effect, I was a mess! Sadness and I were bedfellows. I decided to begin taking charge of my life and found myself a psychiatrist who later diagnosed me with a major depressive disorder. I knew I deserved happiness. I asked God to give me peace.

“Pain has its own noble joy, when it starts a strong consciousness of life, from a stagnant one.” John Sterling

My periods were still painful, but that same year, around September 2017, I experienced the worst pain ever. It felt like someone was pulling my uterus in all directions. I was throwing up every minute. I could not keep anything down. Even the pain injection administered to me at a nearby clinic minutes later did nothing. I could not stand up straight. I wanted to tear my uterus off me. I wanted it gone.

As soon as the nurses and doctor saw me clutching at my tummy, they concluded it could be one of two things; pregnancy or a botched abortion. I was pissed. I was the one in inexplicable pain, I would admit any of those if it meant stopping the torture. It was 9pm and the sonographer was not in, so an ultrasound could not be done. I offered to pay for his fare and begged them to have him come in. He did. His machine was not very clear, but he did see some fibroids. He interrogated me on my period pattern over the years. I was finally given an injection that knocked me out. At the doctor’s office the next day, the doctor told me that with fibroids, one needed to have babies as soon as possible. He prescribed more pain meds and advised I see a gynecologist. My mum and I went through numerous hospital visits for injections, sleepless nights, nausea, back aches, bloating, migraines, chronic fatigue and a whole lot of tears in between. I hated myself and my self-esteem dwindled. Yet all through, my brave, smiling face was on display to the world. I don’t know where I would be without my amazing mum, she took care of me despite her being sick at times too.

Gynae-trauma…

I had heard ‘horrible’ things about how gynecologists would have you open wide and poke poke poke. My virgin self could not imagine going through that, but I took a chance. I mean, my life depended on it. The first one whose office I went to was out of the country but claimed he could treat me remotely. He had apparently done this for years, so he could diagnose me with ease as long as he had the symptoms. I was having none of that.

The second one really traumatized me. He wanted to do a Trans-vaginal Scan which involved insertion of some weird tools. I told him that I was a virgin and all that was really making me uncomfortable and asked if there was an alternative. Instead of answering the question, he began mocking me. “What do you mean you are a virgin at this age? What are you protecting yourself from? This uterus you are trying so hard to preserve is letting you down, so what is the point? You are too beautiful to be single! Can I check my contact list and hook you up with my single friends?”

I cried a good one when I left that office. I had flashbacks of friends telling me that sex was the answer. Others claimed that once I gave birth, the pain would go away, completely. I consoled myself that in God’s perfect time, everything would fall in place.

Finally, a proper diagnosis!

The test I had done revealed that I was severely anaemic. My hemoglobin levels were so low the doctor wondered how I could still walk. 3D imaging also indicated presence of fibroids, Adenomyosis and symptomatic diagnosis of Endometriosis.

Adenomyosis: a condition in which the inner lining of the uterus (the endometrium) breaks through the muscle wall of the uterus. Symptoms are heavy periods, blood clots that pass during periods, painful cramps, bloating.

Endometriosis: A disorder when the tissue that lines the uterus starts growing outside it. Symptoms are painful periods, infertility and excessive bleeding.

The only way to cure adenomyosis is by a hysterectomy; permanent removal of the uterus.

For the next three visits, he focused on boosting my hemoglobin count. When I asked on when we would talk about the Adenomyosis and Endometriosis, he snapped and said some really mean things. That was the last straw. I sought another gynae.

The next one was more sensitive. He put me on a hormone that would hopefully shrink the fibroids and the endometrial cells. He then gently advised that if I wanted babies, it would be best to start trying immediately and close that chapter early. I love children. I desire to have mine someday, but this urgency talk did nothing to lessen my anxiety.

I took the hormone for about 10 months, after which it was discontinued see if it there was any change. When I began menstruating again, it is like the pain came back ten fold. Nowadays I even faint from the cramps, back aches and heavy bleeding. Should I even tell you about the layering I have to do to avoid staining my outfits? Or the precautions I take while on cabs or any other public service vehicle? Next time a woman requests you to open that window or let her have the window seat, do consider complying. I once had to alight before my stop because I was severely nauseated and feared I would throw up on every one.

Relief!

I recently reached out to the founder of The Endometriosis Foundation of Kenyaand asked her to recommend a gynecologist who knew what they were doing. She referred me to one at Aga Khan Hospital.

For the first time in my gynecological journey, I felt like I had found someone who understands me. He took his time to explain to me, complete with visual aids, about Adenomyosis and Endometriosis. He spoke to my love language, quality time. He also explained why many women diagnosed with conditions like Adenomyosis, Endometriosis and other extreme reproductive health conditions end up depressed. The disease takes a heavy toll on your emotional well-being.

When 12 years of physical and emotional pain catches up with you, the tears flow freely. Yes. It all weighs me down sometimes, especially with the loose tongues screaming ‘biological clock’ my way every chance they get. I have of course rebuked infertility and all its relatives, but I wonder if there is a man out there who will understand me enough to know that there are days when I won’t have complete control over what and how I am feeling. To still hold my hand through it all…

The beginning of the future

I have a surgery coming up on Wednesday, 24th April 2019. Other than the fact that I have to figure out how to get the whole amount of Ksh. 450k, I am a little tensed. How will the surgery go? This is the first time I will be admitted in a hospital. It is a little much to handle, but the grace is sufficient. When you ask God to give you strength, He will. Abundantly.

But He said to me ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 2 Corinthians 12:9

I look forward to less pain, a lighter flow and living a normal productive work life as a 30 year old. A restoration.

A life where I am available for my friends and the important events in their lives. I have lost friends because many could not wrap their heads around how a cramp or a mood swing would prevent me from being there for them. A block on Facebook here, another on Whatsapp. I can’t blame them. There is urgent need to educate and sensitize both men, and women, about these conditions.

That said, for every rejection there has been a double measure of love coming my way; from my boss who has been extremely supportive and empathetic, to my colleagues, family and friends in and outside Kenya. It has also been a time of laughter, hope, forgiveness, intense meditation and most importantly, a more intimate relationship with Christ. I really have more than I could ever ask for.

PAUSE: Do consider donating ‘something small’ or big towards Immaculate’s surgery. Here are the M-changa details. Thank you.

https://secure.changa.co.ke/myweb/share/32130

Being Woman…

…is power. Smiling inspite of. It is going through life knowing that God has your back.

I am special, loved. I can do all things through Christ who strengthens me.

#EndoWarrior #Yellow #AdenomyosisWarror #BeingWoman

PS: More stories on the #BeingWoman series here

Being Woman: Betty’s Story.

An incoming storm sends dark clouds and thunder, a landlord sends an eviction notice, white smoke announces the election of a new pope and so forth. But not life. Life just happens. It is hardly surprising then that Betty Onyando had no idea the turn her life was about to take, as she prepared to celebrate a quarter of a century of a life pregnant with expectations of an enchanting future.

SEASON ONE:

I had a great carefree childhood. I was a fish loving, Tom and Jerry fan. I hated getting dirty so I spent loads of time indoors drawing, reading and playing board games. I am an only girl, daddy’s princess; but I am also a first born. First of three – so a second mum by default.

SEASON TWO:

2015 was a year of many firsts. In January, I had an accident that would change the course of my life, forever. One second I was trying to cross the road and then the next I was suspended in the air. My world came crashing down, literally. In his haste to evade the police, a driver had hit me. Turns out he was on his phone so he did not see me. He rushed me to hospital and fortunately, there were no serious injuries – so we thought. I was treated, discharged and I sought to go back to to life as I knew it. Only, it was not business as usual.

I lived with my best friend and she would tell me of nights when I seemed to be having intense nightmares. I would shout, “Ninagongwa na gari! Ninagongwa na gari!” in my sleep. Then came the migranes and convulsions. For the better part of the year I was in and out of hospital, including in December, when I celebrated Christmas in hospital. Multiple MRI and CT scans showed the brain was in tip top condition. At some point, the doctor thought I was faking it, until an episode happened in the presence of a nurse. Tests immediately after showed some strange brain activity. Ultimately, the doctor decided to have a psychiatrist examine me. I was diagnosed with Post Traumatic Stress Disorder (PTSD). I began taking anti-depressants and anti-anxiety tabs.

That same year, I gained about 15kgs. Now this was strange, seeing that I have always been petite. My lifestyle had not quite changed. I more or less ate the same things I would eat in campus, even healthier, I like to think. What was this sudden spike all about? I enrolled in a gym and worked my butt off. Nothing. Stranger things were happening. My periods went on four month boycott. This was the longest they had been absent. In high school and college it was two months, at most. I was alarmed! Since I had insurance cover, I decided to for my first ever gynecological visit.

Hormonal imbalance, they said. I was put on the pill but I soon discontinued as I did not want to be dependent on it.

Later in the year, as I prepared to celebrate my 25th birthday, I bled for more than four weeks – September through to October. For the first time in my life, I experienced cramps. Oh the pain! I really thought I was dying. Distressed, I called my mum and told her what was happening. She could not believe I had not told her earlier. Honestly, as a girl and now a young lady, we never really spoke matters reproductive health with my mother. We were as close as we could be, yet I felt I could not confide in her.

I hope that mother – daughter relationships can be more open and deeper, because home is really where intimacy is supposed to be nurtured.

“You didn’t know you have PCOS?”

was the gynecologist’s reaction when I told her what I was going through. There was no fuss about explanations. I was put back on the pill and that was that. I went back home and consulted the all knowing Ms Google. There was nothing gentle about her response. Immediately, the word infertility stared back at me. It was 1am when I picked up my phone to call my mum.

“I am scared. What if I never have children? I have always wanted a family.”

The gynecologist later explained what I was dealing with, and the necessity of an immediate lifestyle shift. A scan confirmed I had cysts in my ovaries and fibroids growing right outside my womb. They seemed harmless at the time but I decided to have the fibroids removed five months later after a scan indicated growth.

The twenty – four hours leading up to my surgery were everything but festive. I was anxious. Thankfully, my mother and auntie were at my bedside reassuring me in prayer. Would you believe that no fibroids were found during the operation? It was either they were never there in the first place or a miracle had just happened. I want to go with the latter. You know what they say, “When mama prays, good things happen.”

In one year, I had had an accident, been diagnosed with PTSD as a result and found out I had Polycystic Ovary Syndrome.

Things could not possibly get worse, could they?

By 2016, my 5’2 frame was carrying over 95kgs around. Up from the 60s. I was obese. Even with all the gymnastics and diet watch, there was no change. Actually, that’s not accurate. There was. I gained 5kgs, and it wasn’t muscle. Fat.

Mother soon found a PCOS specialist. I immediately felt safe with him. His two daughters also had the condition so this was personal for him. He referred me to an intervention nutritionist who upon examining my hormonal profile found that because of my low metabolism some foods deterred my weight loss efforts. What were the odds that fish would make it to that list? It did, including my beloved omena. This fish loving Tom and Jerry fan could now only consume the cartoon in surplus. The fish, only once in a while.

It did feel like the results were not even worth the sacrifices.

PTSD, Convulsions and PCOS

Remember the convulsions? They got worse. Last year, I was admitted consecutively in April, May, June and July. We noted a similar trend. The convulsions would come just before my menses. It was concluded that the hormonal imbalance was a trigger, joining the likes of insomnia, stress and fatigue.

I had started seeing another gynecologist since the previous one was no longer on my insurance panel. I shared the new developments with him. He was adamant that there was no correlation between menses and the seizures. He did not even yield to my pleas to have him meet with my neurologist. In fact, without explaining why, he changed my prescription to a drug I would later find out is steroid laden. A friend informed me that it was in fact being recalled. He was essentially gambling with my life. I discontinued his services immediately.

The exact cause of these seizures (Catamenial epilepsy) is unknown. However, some women have most of their seizures when there is a lot of estrogen in their body, such as during ovulation. Other women have seizures when progesterone levels tend to drop, such as right before or during their period.

This was not the first time I was being handled like a worthless being. The doctor came late for my first surgical experience ever; four hours after the scheduled time. Instructions had been not to eat anything past 10am. Ulcers were eating up my insides by the time I was wheeled into surgery at 1am. Forty – eight hours later in the FIRST post operational check up, the doctor casually informed us that he had taken the opportunity to puncture existing cysts. Years later, it dawned on me that this was very irresponsible of him. He did not seek consent (mine or guardian’s) and it was not exactly a life threatening situation.

Most people, including so called specialists, are ill-equipped to handle reproductive health issues. If they are not insensitive or dismissive, they are rigid and won’t update their knowledge base. If you are shopping for a gynecologist, get one who is respectful and empathetic too.

Coming out

Taking about menstrual matters is still a taboo in many parts of the world. It is no different in Kenya. The number of times I have been told to stay silent to avoid shame! I did, for a while, but in September (awareness month) 2018 I went public. I felt somewhat liberated from the captivity that is silence. I put up posts on Facebook and Instagram. A couple of friends reached out requesting me to make them T-shirts they could wear in solidarity. The words ‘I wear teal for my friend’ were printed on them. Most of them were men, so it really touched me that they wanted to know more about the condition and help however they could.

There are of course people who still comment carelessly about my weight. Some of them people really close to me. If only they knew what I go through everyday, how hard I work…Don’t get me wrong, I loathe being pitied. I just imagine a world where people will be a little bit more sensitive to the next person. My goal is not really to lose weight, it is to be fit and feel good about myself. If I do lose weight in the process I give myself a high five and soldier on.

I have been through enough to know that self care is sometimes keeping to myself, away from pity and judgment. I am at peace reading a book, watching a movie or baking. When I am recharged and ready to interact I let people in again.

If I was to redo these last four years, I would actually still want to have PCOS. Many may not understand why, considering the days or nights the periods have been so painful I just wanted to lie face down on a cold floor. It has made me a better person. I show more empathy. I speak life, because I know what it feels like to not want to live.

PCOS will not kill my joy and hopes…

Always being on the pill means I don’t ovulate. Still, I hold on to hope that one day, I will conceive and carry a baby full term. That’s plan A. However if plan A fails, I still have options in In Vitro Fertilization (IVF) and adoption. I am even putting away money for these options.

Knowing what I know, I now reach out to vulnerable groups of young girls. I talk to them about menstrual and reproductive health. I really advocate for girls to see a gynecologist at the onset of their periods.

PAUSE: My interview with Betty takes place at a local hospital where she is admitted. As we settle for the interview, her nurturing spirit effortlessly shines through when she offers me some of the fruits on her food trolley. She does that with every visitor who comes into the room. At some point, she has a convulsive attack that sends paramedics into action. CPR, oxygen, stabilization. She wakes up exhausted, and asks me how long she had been out. She then apologizes for the scare. I smile and hold her hand and remember she said she never wants to be woiyed (pitied); but I can’t help but think, shouldn’t I be the one worried about her comfort considering what I just witnessed?

Where am I at with God? Well, we are better now. I was really angry with him for a while.

Being Woman is…

…not qualified by your ability to have children. I know that now.

I want to raise my daughter differently. To teach her that there is no shame in being a woman, only glory.

#Teal #PCOSWarrior #BeingWoman

See story one of the #BeingWoman series here

BEING WOMAN: Rita’s Story

Imagine bleeding everyday for four or more weeks at a time…

Imagine being told it is normal, and having to adjust to that reality before you are even a proper teenager…

Now imagine this being a life sentence…

Many of us only have to do exactly that, imagine. Yet for Rita Njihia, this has been her life since she turned 11. When she got her period that year, she was so excited! She was the second one in her class to begin this journey and wasn’t she proud! It was a big deal to her and her peers. She was finally a woman, well, kind of. Months later, Rita noticed that her periods were really heavy and lasted longer than her friends’. She confided in her mother. The doctors said it was normal. Normal. Bleeding everyday for a month, normal. Hers were irregular, so she thought it a fair compromise for her menses to last a whole month and then skip a month or two or three. Besides, there wasn’t any pain.
But as the bubbly, free spirited warrior narrates, the inconvenience of bleeding for a month would be the least of her worries…

The Diagnosis

I was diagnosed with Polycystic Ovary Syndrome (PCOS) when I was in Form 2. I remember feeling like it was a death sentence. The doctor put me on the pill for some months to regulate my hormones. The side effects were terrible. My periods became very painful, my hair fell off, I gained weight and seemed to be bloated all the time. For the better part of high school, my self esteem dipped. I felt ugly and just not worthy of love. I was suddenly not smart enough, despite having joined one of the best high schools by merit.

(PCOS is a hormonal disorder common among women of reproductive age. Women with PCOS may have infrequent or prolonged menstrual periods or excess male hormone (androgen) levels. The ovaries may develop numerous small collections of fluid and fail to regularly release eggs).

By 2014, I had seen about eight gynaecologists, all in an attempt to find a manageable solution to this condition. 2014 was also the year I met my husband; let’s call him Mr. N. As we prepared to formalise our union, the conversation about having children began. The thought of having our own little Njihia-lets was heartwarming, but deep down I knew that that journey was not going to be easy. In September 2014, I underwent a procedure known as a Laparascopic Ovarian Drilling which sought to get rid of the cysts and perhaps reverse the condition. This was temporary and within a couple of months the heavy irregular periods and cysts made a comeback. It was like they never left.

We are pregnant!

After tying the knot on the last day of 2015 (yes, we are extra like that!) we were delighted to embark on the beautiful journey called marriage that we had heard so much about. We were not in a hurry to pop babies and since I was hardly ovulating, there was no cause for alarm. Later on though, my gynaecologist advised me to take my reproductive health seriously and suggested measures to get back on track; one of which was taking ovulation-inducing drugs. I worked on my diet. I know the struggle of craving a juicy burger but having to settle for a salad – the healthier option. I kept at it, and last September, we were thrilled to find out that we were having a baby! We were so happy. I can’t even fully articulate the joy. I was so keen on self care. I wanted my baby to be safe.

Scans are normally done at 12 weeks, but since mine was high risk, my gynaecologist suggested I go in at 8 weeks, just to make sure everything was alright. The nurse conducting the scan kept asking me if I was sure I was 8 weeks pregnant, but no alarm was raised. We went home.

A few days later, on a Sunday evening, I realized I was spotting. My doctor was unavailable on phone, so we rushed to Nairobi Hospital. By the time we got there, I was in so much pain. At that point, I was not too worried about the spotting as it had somewhat stopped. Unfortunately the situation turned and I began to bleed heavily. Still, I was hopeful that it was nothing serious, after all, I know a couple of people who spotted / bled during their pregnancies and went on to deliver healthy babies.

I watched the sonographer keenly. He had a puzzled look on his face. Just like the nurse a few days earlier, he wanted me to confirm how far along I was.

All the cramps in my lifetime put together could not compare to the pain I was feeling.

It turns out all the pain I was feeling was actually labour pain. At some point, as we waited for the ultrasound results, I excused myself to go to the bathroom, and that is when it happened. I was peeing when I suddenly felt the urge to push, so I did – and delivered the eight week old foetus (which I later learned had stopped growing at six weeks). I caught it just in time too.

I sat there for about ten minutes, holding my little one in my hand, taking in its minute details. There was a head, the eyes were dots yet to form and the hands were somewhat visible.

It was a real human being I had been carrying.

I didn’t cry, at least not immediately. I did not even feel sad. I calmly washed my hands and wrapped the little one with tissue. I then walked back to the waiting room and showed Mr. N our little one. It was in the tight embrace that followed that I finally broke down. It was so unreal.

I questioned God.

One would think that seeing babies around me would make me sad or escalate my depression. Not quite. It was their mothers I could not stand. I just wanted to be left alone to mourn for my baby. I did not want to hear the infamous ‘it is well,’ line, because it wasn’t.

Why would a God who loves you give you something then take it away, violently?

I did not understand. I did not feel like praying.

The people around me did not stop praying. My parents and my in-laws would visit and encourage us. They really were God-sent. Gradually, I began to pray again. Prayer gave me space to be angry at God. I kept quoting Bible verses and challenging God about about his promises. Amidst the anger and frustration, I found strength. I was still shaken, but I did not doubt God’s love and good intentions for me anymore.

Healing

In that dark hole, I found myself retracing the steps leading to my miscarriage. I wondered if there was anything I did that had caused harm. Was it that long walk in Murang’a? I beat myself up a while, but I later recalled the words of the doctor the night of the miscarriage;

“There is nothing you could have done or not done that would have made a difference. It is not your fault.”

I was struggling.

I decided to seek for help with Still A Mum, and I made some progress. Mr. N and I later saw an experienced counsellor so we could heal together. It is often said that a bereaved man often hurts because the partner is hurting. These sessions helped him understand, somewhat, what I was going through. We listened to each other and spoke about our loss and what we were feeling. So yes, seek medical help. Prayer is awesome, but do not negate the place of professional counseling in dealing with loss. In fact, they work great together.

Our parents were amazing. They paid for our counseling sessions and supported us financially, especially after our insurance maxed out that fateful night. I find it heartwrenching that as a society, a lot of people remain shredded in silence. When I began talking about my experience, some of my friends opened up about their own losses. I wondered why vulnerability is frowned upon so. It is okay to share. Sometimes, a support group could be the thing standing between you and healing.

Of course it is still hard. At times I find myself thinking about how far along my pregnancy would be today. What a kick from my baby would feel like…my angel.

But I am alive! I am looking forward to what this life has to offer.

Still a PCOS warrior!

Six weeks post-miscarriage, the periods were back. They are still heavy, but the cysts have since reduced. Turns out that laparoscopy was not exactly necessary. My getting pregnant was testament of me being able to conceive and possibly sustain a pregnancy. My doctor is now administering treatment that looks to get my body back on track.

Everything about managing PCOS is expensive. Back then, I would use a pack of eight sanitary towels in day. Not much has changed, but things are better. How hard is it for women who can barely afford to eat, let alone buy pads? For fertility treatments, expensive is an understatement. I recently spent about Ksh. 42,000 in one day for consultation and tests. We have not even factored in the drugs. With PCOS (or other reproductive health issues), your chances at having children can be determined by your financial abilities.

I will be 28 in a few months. It has been about 17 years of living with the condition. I am long past asking ‘why me’. Today, I give myself to the service of others. I am currently volunteering with Still A Mum as we work on developing strategies to reach more women. I also use my blog to amplify PCOS awareness.

Being a woman…

…is hard, but I sure am glad to be one. I love that we are resilient. Our bodies can be frustratingly complex, but isn’t it beautiful how this work of art carries and supports life?

A woman is like a big tree with lots of shade. We draw from experience so we can cover others.

#17YearsStrong #PCOSWarrior

PS: Read what inspired the #BeingWoman series here

Being Woman – The Series

March was a beautiful month. There were lots of things to celebrate including my birthday and International Women’s Day. It was also the month when a heat wave roasted and threatened to melt us alive. Yaani you avoid using any petroleum jelly on you because you might end up smelling like nyama choma. In a land where lions roam freely, this is a life and death situation. Weuh!

The most obvious survival tactic was hibernation. This was well executed, unless an occasion demanded my honorable presence. There was one that I absolutely had to attend (mostly because family) – a baby shower! Yay! New life Incoming! Make way!

It was a small intimate group of denim wearing girlfriends eating rice, beef stew, kuku kienyeji, vegetable salad and downing all that with Quencher juice. Nothing complicated. Maybe too simple even. Imagine we (read mum-to-be) ‘forgot’ to order cake! We looked okay, but deep down, we (I) really wanted cake. I guess we should be grateful that waist threatening calories were averted, yes? Besides, there was lots of laughter to fill the void.

It was a lovely afternoon affair that then gave way to a relaxed evening of tea, and lime juice (for the ones who over-ate. No names). We talked candidly, long into the night about our lives and the discussion gradually drifted towards reproductive health. Every lady had a unique experience to share. Most of the stories shook us and we wondered aloud why every woman alive does not have ‘superhuman’ as their middle name.

It was unanimous. Being a woman is hard. Eh. I was utterly awestruck by the vulnerability these young women showed. I could feel their unbelievable strength engulf the room, inspiring such powerful unplanned release and freedom. All this made me think, you can’t just numb vulnerability. If you do, you collectively numb your all feelings. What good is that in life?

There and then, I decided I was going to write stories. All sorts of stories. Different women talking about their reproductive health struggles and journeys. I don’t quite know in entirety the scope of conditions I will cover in this series, but I have an idea, and I am starting. I will find the stories, or they will find me, but bottom line is, they will be told.

And here is the thing. There is no ‘moral of the story’ gist at the end. Well, if it appears, it wasn’t intentional. I just need to hear stories and then share them with others – you. Silence is golden, yes – but listen, sometimes people just need to know they are not alone, (is this a moral of a story? 😂) and you talking unashamedly about your life could be something!

So ladies, and gentlemen, I present to you the ‘Being Woman’ series! Every Wednesday on your favorite blog (no, not that one – this one!) Come we beat and hear stories, yeah?

Awesome!

PS: Thank you wonderful women for trusting me with your stories.

Daybreak

We live in a very interesting society.

One that will stand by and watch as a pregnant woman is clobbered to death by her husband. You should see us, gathered in our little groups, shaking our heads and clicking our tongues in frustration, decrying the increasing rate of murders caused by domestic violence. Did you see that clip where a woman filmed her dying husband whom she had just poisoned?

“Mambo ya watu wawili usiingililie.”

In this our society, we fail to report fishy characters around our homes and workplaces. Later, we are seen on TV narrating how the terrorists would consistently pack their car at the same spot for two weeks as they scouted the now bloody, smoke engulfed and bullet riddled area of interest.

“Pambana na hali yako.”

What is it about us, that as a society, we often see nothing wrong with forcing our values and beliefs on others who clearly do not subscribe to the same school of thought? We neglect our roles as caregivers, guardians, parents and then holler our oesophagus hoarse at people living their version of their best lives;

“Mnaharibu watoto wetu! You are not behaving like role models!”

You might recognize yourself here. You know, how we as a society insist that palms must be oiled for services a tax paying citizen has eternal rights to. We bribe left, right and centre and adorn it special names like chai, kitu kidogo, soda.

“Wee shinda hapo. Passport yako utaionea viusasa usipolipa mtu.”

The death traps we call hospitals je?

“Haidhuru…”

Except, inadhuru.

By all means, let us continue protecting and making excuses for religious leaders who are increasingly becoming as different from vile politicians as one polka dot is from another. Hurt is acceptable as long as it inflicted by them because long suffering is lauded and admired.

“Touch not my anointed.”

We are still the same society that come 2022, will forget how we, a collective Wanjiku, suffered together the effects of a leadership keen on breaking backs, souls and spirits. We survive, barely, but come election day, we ignore and insult the heck out of each other;

“Mambo ni six – piece suit. Kumira kumira. Our person. So and so will never be president.”

We are the society remains bound, even in freedom.

Can we also talk about our twisted sense of humor? We are great satirists. We make a joke out of everything; hashtag and meme Lords. Maybe this is how we numb the pain and hurt we refuse to confront. But for how long? How long will we ignore the fact that our anger is always redirected from the deserving target?

Imagine your taxes are actually meant to work for your good? Excellent roads, healthcare services, markets, guaranteed safety, dignified employment opportunities etc etc. But you have heard all this before, right? I don’t know who needs to hear this again, but imagine this is a reality that can be achieved in your lifetime…just imagine! Your little finger can squash that blood sucking, money laundering, disrespectful fool of a bedbug dead!

You are not as helpless as you reckon.

Whatever has you, us, adopting this complacent attitude is serving their last term.

“May the day break.”