What did you say again?
Endometriosis! Try say that out loud. Go on – try!
Now try saying it again and again. Super hard to pronounce right? My mum still shrubs on this word. “Endome… endotri… Endoto… “Personally, I almost forget what the word means, it comes in so many shapes and you can just lose track of what it is, what causes it, how to manage it… so many questions!
Now if you thought pronouncing ‘endometriosis’ repeatedly was hard, imagine living with it. Again and again.
When I turned 13, I was still clueless about what periods felt like. All my friends had experienced them and I couldn’t be the only girl who hadn’t had hers, so obviously I was super psyched in anticipation to get them. (I still wonder why I was so happy – is it a milestone? Sigh!) Months later, my parents and I were seated at a clinic waiting to see a doc because I was bleeding heavily from my nunu and nuni (both front and back).
None of us knew that this was the beginning of painful and tough times. At that point, both the doc and my parents thought it was amoeba, but after tests, all the doctor could do was give me sanitary towels.
I was now a young woman.
The next day, my mum had my aunts calling to congratulate me – apparently it is a big deal to get the red robots. However, days later I was still in pain and I missed school because it was unbearable.
Let me put it this way: When one is seated on a plane, you are normally prepped in case of an emergency – where the mask is? jump from here etc… it scares me to be on an airplane but at least I feel like I’d know what to do. Mh! (or maybe I would just be scared shitless and faint?)
With endo, you have no clue what is about to happen. Is it pain? Is it fever? Is it diarrhea? You almost live like a stranger in your own body, waiting for the owner to come reclaim it every month.
Pain is not the only challenge of living with this condition. It is daily torture. You never know what to expect – that slice of bread or that glass of milk could land you at the ER.
I met one endo warrior who told me that she blacks out because of the pain; another has no pain at all, she was just infertile. As you can see, endo takes many faces despite being a faceless douche-bag.
The other day I was at the ER and had a trans-vaginal ultrasound that indicated that I had a cyst on my left adnexa – is that even a body part? That sounds like a name of new planet that only supports the life of camels. (I love camels.) Anyway, with endo, I ended up knowing parts of my body that I did not know existed. Seriously, what is an adnexa?
So the question that most ask is, what is endo? This explanation is a dedication to my friend Natukunda who, to this point, has still not been able to understand what the condition is – and no, it’s not for lack of trying.
Endometriosis is often a painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus.With endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other. This entire process makes it extremely painful to live a normal day to day life.
Endometriosis most commonly involves the ovaries, Fallopian tubes and the tissue lining of the pelvis. (And the adnexa) however, endometrial tissue may spread beyond pelvic organs.
When you read this, it may still sound hard to understand, I think, it’s just too foreign, I wonder if there is a Swahili word for it? Any idea?