She turned her nightmare into mission to help women

She sat across from me in the lounge, graceful and elegant. I did not steal a glance, I stared. She was all decked out in a glorious electric yellow like she had borrowed the sun for the day.

I had no idea I was going to share a podium with her. Our host introduced us and that was the beginning of a friendship driven by a common goal, to drive the endometriosis awareness campaign in Kenya. Her name is Doris and she is one of the very few people I know who can out-talk me.

While I have studied it and treated women with the condition, I have no idea what it means to live it. Doris does. She did so for 38 uninterrupted years. Endometriosis was her constant companion for almost four decades, reminding her that they were bound together till menopause do them part.

Doris stepped into adolescence with no inkling of the nightmare that would be her womanhood. She is the text-book description of endometriosis. She endured the painful periods that got worse with every passing cycle until they reminded her of a well-powered chainsaw going manic in her pelvis every month.

You know your periods are torrential when you start shopping in the diaper section instead of the sanitary towel aisle, yet you do not have an infant at home. And just when you thought it could not get any worse, your cycle decide to do you one better and bleed even between menses.

Did I mention the nausea, vomiting and diarrhoea that accompanied the torrents? It was not enough that she had to content with the pain and heavy bleeding, the other body systems had to join in the chorus just for fun. The severe anaemia resulted in an incomprehensible fatigue and listlessness that cost her career progression. The constant back pain made her question the evolutionary wisdom of humans needing to walk upright.

Outside the uterus

Doris sought a diagnosis for 26 years. Years of pain, self-doubt, isolation and exasperation, wondering why her body was constantly at war with her.

The relief of finally understanding her condition was a soothing balm to her bruised soul. She could comfortably live with the harsh truth that there was no cure for her affliction as long as she could put a name to it.

The normal uterus is made up of three layers. The outermost coat is serosa, which holds the organ together. The middle one is the myometrium, the muscle layer that contracts during labour. The innermost layer, the endometrium, is special; it is made up of glands and blood vessels that respond to the female hormones throughout the various stages of the menstrual cycle.

In pregnancy, it nourishes the embryo and the placenta. In a normal cycle, it sheds off as the monthly period.

In endometriosis, the endometrial tissue happens to occur outside of the uterus, commonly in the pelvis but may spread throughout the abdomen and in rare instances, to remote organs like the lungs. While in these abnormal sites, it will continue to respond to hormones and shed, causing bleeding in the wrong cavities. This stimulates the body’s immune response to get involved, resulting in extreme inflammation and pain.

Worsen symptoms

The tranquility that came upon Doris enabled her to face her tormentor squarely in the face and take some tough decisions. She was willing to part ways with the uterus that had tormented her for so many years. The decision was made easier by the fact that the uterus had taken on unauthorised passengers in the name of fibroids, which served to worsen her symptoms.

Just when she thought she was done looking, she found her magic bullet; a little magic pill that gave her immense relief, guiding her towards the possibility of a normal life.

Doris’ journey has a happy ending crowned by an adorable little girl who has made her a mother. As she reclines in her seat and deeply exhales, she is under no illusions. She knows many are silently on the same path, without a voice to express their struggle. Her mission is that women from all walks of life and of all ages, need not suffer for so long.

This was her springboard to make endometriosis a common terminology to all. She founded the Endo Sisters East Africa Foundation, a social advocacy organisation creating awareness about the condition. Yellow is their colour and the ‘Yellow Nails Campaign’ is their brand.

They partner with nail spas across the country to give discounts to clients who choose to paint their nails yellow in March, the endometriosis awareness month.

She wrote a guidebook for adolescents about menstrual disorders, aptly titled ‘When Something Is wrong’, available on Amazon, the Endo Sisters website and select bookstores.

As I sit here looking at my yellow nails, I pray for some of Doris’ energy. The battle against normalising period pains for girls is far from over.