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?

6 Comments

  • Thank you my girl Jess. I kinda have a rough idea about this now. It’s still all complex but the learning shall continue. I think the biggest issue is that people do not understand this condition– i didn’t understand when i called you too delicate coz the endo was having you so bad.

    Keep going. Keep positive. Keep Winning.
    Lots of love dear.

  • Trying to digest everything it’s really hard but with God everything is manageable,thank you for this great information,you are in my prayers

  • I recall the first time you told me about your condition, I had no idea what it was and immediately after our talk i went online to research about it. It was still abit hazy to me but I was and still impressed with the strength you exude. You haven’t let it put you down but you are using it to create awareness and empower other young women out there.
    If this is not a definition of a SUPER WOMAN, I don’t know what it is.

  • Nice one dear.. Am proud of you being strong to open up. .. Endo is very broad especially having that different women have different experiences am sure with time society, family and friends will be familiar with this condition.
    Having Jahmby koikai with Endo but her situation is totally different from yours in as much as guys would go like ‘is it the same condition as the one for jahmby?’and still have to explain it’s the same name but can affect on different parts in the body just like cancer having breast cancer, colon cancer,throat cancer etc… Jahmbys Endo is for lungs and yours is different and other ladies as well.. Am learning alot as well from this and I believe we will find a cure. The government needs to address this condition affecting women in silence and have doctors start researching it because if it’s already having the numbers growing up from women we need to let them address the red flag and above all God is on control of all this May His will be done and give wisdom to all doctors coming across women with this condition and giving them advise etc.

  • I love how you tell your story Jess.. And you’re incredibly strong for all the agony endo must cause you.. Love and love..

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