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.
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.
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…
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