Endometriosis, Pain and Purpose

My eyes are a conversation starter. They look different.

“I wear contact lenses,” I normally say to the people that notice them.

“Oh, wow…”

“Nah, kidding. I use the contact lenses line to get this wow reaction all the time. Actually, my eyes are sick.”

“Are they, really?”

“Yes. See, if you look keenly, you’ll notice that there is a grey ring over the area of the iris, almost as if it was closing in on the pupil”

“Yeah…but still! Your eyes are so cute!”

“Thank you!”

Listening to Episode 21: Your Pain Serves A Purpose of Nabuguzi Kiwanuka‘s HashTime With Nabuguzi Kiwanuka podcast brought back memories of the struggle from my childhood to get my eyes to see and be better. Nowadays I know exactly what’s up but back then, it was never-ending trips to the hospital and to the clinic.

The diagnosis had always been clear: Allergic conjunctivitis, but what was a diagnosis without relief?

One doctor after the other recommended a certain ointment or a certain eyedrop. Random people would recommend herbs and such bizarre remedies as “Let her wash her eyes with urine.” Then, “Ghee, use ghee” and “Go to Mengo hospital, they have this eye drop that is really good” like we had not already been there and they had recommended glasses for a 7-year old. 

Okay, we tried. Yes, even the herbs. The eyes still remained red, itchy and painful; the eyelids puffy and every morning I woke up with my eyes glued shut. Other days, it would appear as if they were alright only for them to cause havoc a few days later.

I was prescribed a lot of things until we settled on two brands of eye drops that seemed to do their work just alright. It was not perfect but there was huge relief.  I lived on those eye drops right into my adulthood. Then I joined university.

“Did you say you have used these eye drops since you were seven?” The ophthalmologist asked.

“Yes”

“No, no, no. How? That is wrong! A steroidal anti-inflammatory is not meant for prolonged use! That was a big mistake. Kindly discontinue use immediately!”

That was during my university entrance, first examination at the University Hospital. It was also determined that my vision had considerably detoriorated in my right eye. The conversation around getting glasses resumed around this time. I gently disregarded it and refused to think about it.

During my third year, during a pharmacology lecture where we were studying about toxic plants, I learned about a plant called Lantana camara which the lecturer said was “toxic, caused damage to the liver and kidneys; and caused UV light induced skin injuries- technically referred to as ‘photosensitization'”

You remember those herbs random people recommended for use? Lantana camara was one of them. We tried that too. It was sad to think that I had actually put a poison into my own eyes.

It is upon this background that I related deeply with the desperation that the anonymous guest on HashTime With Nabuguzi Kiwanuka podcast went through as she sought to find relief from a chronically painful menstrual period. Unbeknownst to her, she suffered from a medical condition known as endometriosis.

According to Mayo clinic, Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue similar to the tissue that normally lines the inside of the uterus — the endometrium — grows outside of it. It most commonly involves the ovaries, fallopian tubes and the tissue lining the pelvis. In rare cases, endometrial tissue may spread beyond pelvic organs.

This tissue behaves like normal endometrial lining and will also break up and bleed like normal uterine tissue at the end of every menstrual cycle. This comes with, amongst many signs, excruciatingly painful menstrual cramps. Because endometriosis is not commonly talked about, this condition often goes wrongfully diagnosed or undiagnosed at all with many women passing the pain off as normal period cramp pains.

As she narrates the process of the struggle to obtain a diagnosis and thereafter to seek treatment, the guest takes you through a journey of desperate attempts to try and obtain treatment for her condition. Even when she narrates it hilariously, it becomes increasingly harrowing as she tells of how she finally descended to seeking the services of a herbalist. She eventually managed to meet a good doctor who helped her managed her condition and still does so to date.

In my case, it turned out that I never really needed much of medication at all. Like the guest, what I needed to do was only to manage the condition, by simply avoiding the triggers and only occasionally using the medication when I needed it.

The scars of this are the grey rings in my eyes for which I get complimented on their beauty. Our guest did not have a comparably better fate. It turns out that not only was the herbalist a sham, but her methods also aggravated our guest’s condition so badly that she had to be rushed for emergency surgery in which she eventually lost one of her ovaries.

Yet, you would be shocked to find out that she does not regard her condition a terrible misfortune that befell her. If you only heard the tone of her voice as she shared her story, you would think she was talking about a great trip she went on to a beach in the Bahamas and not about a painful condition with which she has lived and will continue to live with for a very long time.

Her condition has played a part in redirecting the guns of her law education towards advocacy for better health systems. She is also engaged actively in endometriosis awareness and belongs to a community of other women undergoing similar experiences, where they offer each other support. It was precisely because of her story that I became aware of this condition.

Hers was a story of faith, strength and finding purpose in pain. While it may appear that it was about endometriosis, it was, really about handling the unique challenges in our lives and allowing them to raise us to levels above the pain that they cause us or the difficulties of life they subject us to.

You can listen to the story by clicking here.

Kind regards,
Anna Grace