Oh, that our voices will be heard. We hope that policymakers, health care providers and the society at large will hear our cry and help us.
Endometriosis is real! It is as real as the air that we breathe. Trish Barasa gives us a glimpse of her life as an Endowarrior. The highs, lows, and oh-my-goodness-not-this-too.
Trish is a strong and deliberate warrior. She is fighting much more than Endometriosis.
My name is Teresa Barasa, and I am an endo- survivor, and warrior. My friends call me Trish. I am 37 years old and a loving mother of 2 children. I am a socio-economist by profession currently a public policy scholar at the Strathmore business graduate school. I am a free spirit who finds gratification in serving humanity and impacting lives around me. It gives me a deep sense of satisfaction knowing that I have in my limited human capacity uplifted a soul and lit another’s candle. I smile at the slightest ray of light and break into laughter in sparks. Conversely, a dying candle saddens me, whether my own or another’s. Darkness leaves me desolate and impotent.
I had an early menarche, judging from my classmates, relatives, and playmates. I vividly recount of the events: I had just turned 12, and this particular evening was the eve of my uncle’s wedding. Relatives from upcountry had convened in our house for the event. To my awe and dismay, I woke up soaked in blood. My morning was wrecked. All the home science lessons on menstruation vanished into thin air in my current reality- and so my day began. As fate would have it, I continued to stain myself at the wedding bringing my predicament to the attention of female relatives who took it up to clean me up and improvised a pad for me with cotton wool. They wittingly introduced me to the birds and the bees story. It never stopped flowing for a whole week staining all through – I tied a sweater around my waist to conceal stains.
From the word go it was staining and painful. And it has never disappointed since – only I became better with time in treating the pain using non-steroidal-anti-inflammatories (NSAIDs) and had access to better pads. A quarter a century later, my cycle can best be described as shorter than the typical ‘moon phase’ of 28 days, sometimes as short as 2 weeks with a heavy flow that on various occasion stretches to 14 days. A friend jokingly refers to this phenomenon as the ‘long rains’. I must confess I sometimes can relate to the bleeding lady who touched the hem of Christ’s garment. Strangely, this is my normal for I know no better, when it comes to my menstrual cycle.
At the age of 25, an acute attack of gastritis brought me to the verge of a mental breakdown from excruciating pain, prompting me to crawl to the Nairobi hospital ER. I brought everything to a standstill. I was in a lot of pain and I refused for anyone to touch me even the doctors who should be treating me. I was eventually sedated and admitted for extreme abdominal pain. A team of doctors was setup to attend to me who included a Gastroenterologist, GP, Gynecologist and Psychologist for reasons that I was manifesting mental symptoms. I had had several painful abdomen moments before but this one had literally run off with the red line. On evaluation, I was diagnosed with peptic ulcers from an endoscopy and a pelvic scan report showing tissue in the pouch of Douglas (POD). The findings from the pelvic scan led to a scheduled laparoscopy. The gynecologist, a renowned specialist in the female reproductive system explained the need for what he referred to as a non-invasive surgery for the diagnosis of a condition he had clinically diagnosed me for – endometriosis. My first encounter with a condition that has since redefined my life. Procedurally, I had surgery. This was followed by a biopsy which proved that the tissue excised from the POD and deposits from the region near my rectum was indeed endometrial tissue.
This marked the beginning of my journey of living with endometriosis. First was the diagnostic surgery that also doubled up as a remedy for endometriosis through ablation of endometrial tissue that was visible. I was thereafter presented with treatment options that were mainly hormonal for the suppression of estrogen.
There is no cure for endometriosis, at least not yet. But there is a choice of treatment plans that different doctors will propose depending on the severity of your endometriosis, affected organs, and expectations to alleviate or improve the situation. For me, the pain was unbearable and the effect on my rectum, bladder and related systems was inexplicable. The thing about endometriosis is the deposits that are wrongly placed will respond to the follicular and luteal phase and shed off in their misplaced locations just like the endometrial tissue in the uterine cavity: these as responsible hormones fluctuate along with the menstrual cycle. The result is a host of abnormalities, mainly inflammation, pain, and infections.
I have suffered menstrual symptoms (painful cramps, long menses, short cycles, bleeding and spotting in between periods), urinary symptoms (urinary tract infections, painful urination, and incontinence), digestive symptoms (bloating, constipation and diarrhea), pelvic inflammatory diseases, severe migraines, musculoskeletal symptoms, and chronic fatigue. For these, the doctor proposed treatment through the hormonal implant Zoladex for 6 months. Zoladex is a gonadotropin-releasing hormone agonist (GnRH) which is used in the management of endometriosis by both alleviating pains and reducing endometrial tissue. Zoladex acts by suppressing the production of estrogen thereby reducing the formation of the endometrial lesions consequently the pain. Zoladex implants are given through injections that are administered one in a month. Besides Zoladex, I have used Depo-Provera for a year, combined oral contraceptives and other related medications to suppress estrogen.
To date, I still contend that Zoladex treatment is but a necessary evil. I say this because I suffered the drug’s worst side-effects. For 6 months, High blood pressure, headaches, hot flashes, mood changes, low libido, breast tenderness, constipation, nausea, insomnia and vaginal dryness became the order of the day. As I counted down the 6 injections, my day to day abilities were suffering the side effects. Note, endometriosis in its very nature affects every other part of your system; these effects are compounded by the medication used to manage pain, bleeding, and to treat the infection or improve the digestive processes.
Pelvic pain is a common symptom but many others may occur depending on the site of the deposits. The pelvic pain sometimes can be as a result of inflammation processes consequently infections from the endometrial abnormalities. I am said to have a retroverted uterus. Not sure if this is endo- related but it exerts pressure on organs in my pelvis.
With deposits occurring at the POD and spread within the rectal and bladder region, my pelvic pain was accompanied by constipation and urinary problems. When hardest hit by constipation, I have found myself starving myself so that I don’t have anything to excrete because defecation is a nightmare. As gross as this may sound, constipation can be so severe resulting in heavy bleeding that needs a pad to the rectum and time to heal. As a subsequent to constipation is diarrhea leaving one depleted and dehydrated. In addition, is bloating arising from the digestive abnormalities which can be very painful. Right next to the rectum is the bladder which is equally affected on a regular basis mainly through urinary tract infections (UTI). From experience, I can almost predict a UTI even before it develops.
Against every dolorimeter of pain, against every end of the road, against every recurring symptom, again every escalating situation has been a blow on my mental status. Perhaps dead brain cells. Dealing with ovarian cysts is another hurdle every woman with endometriosis has to navigate. I have personally had an operation from torsion and still have to deal with the menacing cysts which affect the flow, pain, and infection.
Trish, I pray that you will find strength for each new day and healing. May you touch the hem of the garment.