Pain changes you, and sometimes it births within you a desire to be the change that you want to see. That is the story of Elsie Wandera, our third Endo warrior on this series
Elsie is strong, driven, resilient and passionate. After struggling to get a diagnosis, she chose to speak up about this condition which many women suffer in silence because most think it’s shameful to speak about and to support the women suffering from Endometriosis. She is the founder of the Endometriosis Foundation of Kenya.
She first shared her story with me in 2017.
My name is Elsie Wandera and I am 36yrs old. I am a trained Journalist & recently graduated with a degree in Communication – Advertising major from Daystar University. I have experience in Personal Administration and I’ve worked in a marketing capacity for 2 FMCGs. I am also the founder of Endometriosis Foundation of Kenya focusing on raising awareness and advocacy on Endometriosis. I am also the founder of My Heart Scripted where we run a 10-week experience called Purity & Purpose, that helps women pursue purity and unlock purpose.
The thing that makes me smile is knowing that I have played my part in making the world a better place and seeing other people smile thus.
Where it all begun
I started my periods when I was in primary school. I sincerely thought I was dying, I remember I crying in the shower because I could see this brownish flow but I could not tell where it was coming from. My mom then told me it was okay. I remember I had to buy pads, that was exciting as a girl, I even remember how they smelt then 🙂.
Managing the pain
The pain begun when I was in high school around the age of 14 or 15. I remember I experienced such bad pain that I had to be in the clinic during the days I was on my periods. These were formational years for me and I thought there was something wrong with me. I continued the journey with the knowledge that periods are painful and I dreaded the days.
Diagnosis and treatment
I was finally diagnosed with Endometriosis in 2006 through a laparoscopic procedure, the Obs/Gyn simplified it for me by telling me that my uterus was growing inside out. He found a chocolate ovarian cyst that was bleeding, it was by God’s grace that he found it because it was one of the things that contributed to the pain.
Upon diagnosis, I was put on a hormonal therapy treatment. This was administered subcutaneously every 28 days below the navel line for 6 months. It had the worst side-effects for me among them: headaches, hot flashes, breast tenderness, nausea & vaginal dryness. Once I completed the dose, the effects of endometriosis which include: chronic pelvic pain, painful bowel movement, painful sex & heavy bleeding became worse. I recall lying in an ER calling my Obs/Gyn and asking him amidst tears why it is back. That was when he revealed that it has no known cure and is recurring in nature. What’s interesting is that he requested me to consider getting pregnant soon (I was 26 then) because one of the effects it contributes to is infertility among women. However, this is not a solution, it is a Band-Aid for 9-months that does not guarantee that the condition will not relapse.
At 34, I had to go through another laparoscopic procedure where the they removed another ovarian cyst and the adhesions around my uterus. This was interesting because I did not know that surgeons had specific parts of the body they could cut and others they could not.
Endometriosis has affected many aspects of my life
The condition caused physical pain and as a result I dreaded my period and yet it is a gift from God that should be enjoyed by every woman. I had difficulty going for long calls and it was the worst feeling – worse than constipation. I also had very painful ovulation, sometimes I called it “the egg-is-moving day.” I was dependent on pain medication and anticipated pain every month which is not the way any woman should live their life. I also stopped eating as the period approached due to the nausea and difficulty passing long and short calls.
It was draining because I had negative thoughts and more importantly, because of the research around the condition and what one doctor told me, I knew I would never conceive. At some point I thought it was God punishing me for a life I’d lived carelessly before.
I was always uncomfortable because I needed to explain myself and why I was going through crippling pain. I was conscious and limited in dressing comfortably because for me it meant sagging clothes because of the physical discomfort during my period and the heavy flow. God forbid I’d stain a seat when the flow opened after a bubble escaped, those were messy days.
I dreaded having to explain my colleagues and leaders that once every month I’d be disabled and sometimes unable to come to the office. It’s interesting that on those days people would still expect me to deliver my tasks and it would seem like it is not as serious as other physical ailments. But over all I never had an issue especially after I learned what the condition was and that it had a name.
I have made changes in my lifestyle
The biggest changes I had to make are around diet and physical exercise because I understood the disease and what it would require of me. I cut down on gluten, wheat, dairy and red meats and increased intake of greens, super foods & supplements to ensure I was enriching my nutritional value. Water intake also is my highest priority because it is a natural cleanser.
My current challenges
I think sticking to the diet and relapsing to eating unhealthy foods is the greatest struggle. I’ve learned my body enough to know when I’m craving foods, then I try to compensate with a healthy choice.
Learnings from the journey and words of wisdom to other women suffering
I think my greatest learning was understanding that my body is different from another woman and I have to prioritize my health, because no one else will if I neglect it’s cry.
We also need support from the world and by telling my story I’ve encouraged another woman to know she is not alone. Therefore, tell your family and friends once you are diagnosed and stop self-medicating and seek professional advise because the body was not built to constantly rely on medication. We also need support from government, employers and medical industry for the sake of all the women in finding a cure and supporting them in every way we can because it takes away our most reproductive years of our lives which we cannot relive.
Every woman’s pain is valid and if doesn’t matter that you don’t understand it matters that you stand with her as it is not easy to bear.
Thank you, Elsie, for sharing your story with us. Your voice matters and your labor is not in vain. Keep blazing!