Image by By Kate Miller-Wilson
Hi everyone, I trust you all had a splendid week -the best kind if you were in Nigeria and had a grand two days off. I was really hoping our presidency would make nice and give us Friday off, gain some favour points with its citizens in there but clearly that was a lot to ask of this Buhari government ;-).
Again, thank you all for the humbling feedback and reception over my writing. Many have alluded to bravery and boldness. I am finding it hard to reconcile those words with why I write on here though. I do not consider my sharing as either, the key emotion really is not strength, but exhaustion mixed with confliction. I am exhausted by my experiences, exhausted by the stories people are sharing with me privately, I am exhausted by the culture of silence that allows women to go through these experiences without speaking out because “Suck it up” is our natural response to these things. To know me is to know fun and anyone who followed my last spurt of writing would have been mostly entertained; It was fun, light, hilarious and entertaining. This current stream feels heavier… What can I say? I have evolved. I am becoming she who audits her existence and while fun still defines me, depth nourishes me. Okay, enough philosophical lyrics, let me get on with why we are all here.
Today I am bringing you Aimanohi’s journey. As you might tell, I write from a place of humour but today’s post is heavy and might be triggering but stick with it, hopefully you’d learn a thing or two that helps you or someone deal better. Enough rambling, shall we begin?
Aima tells an ongoing journey of endometriosis. I have known her all my life so I know snatches of this journey but never as in depth as when I called to speak to her about sharing. As is often the case with most people experiencing endometriosis, Aima’s story begins with pain. Pain that is initially managed by over-the-counter pain medications but as it progresses, it worsens and so do the flows. The defining moment would be a fainting spell in the office. She describes it in so much detail that I lived it. During one of her severe pain bouts, she takes a break from work and walks into the store to catch her breath and then passes out, hitting her head on a metal filing cabinet on her way down. When she comes to, she has no idea of what has occurred but is so weak that calling out for help is a herculean task. Thankfully she has a ring on and by generating enough noise from tapping the ring to the cabinet, help comes, and she is lifted up and out. She has suffered severe anaemia from the bleeding and has to be treated for this. Such is the strength of a woman that she returns to work the very next day.
In 2013, She begins to experience pain specifically on the left side of her abdomen. The pain is intense enough to warrant a doctor’s appointment and she is diagnosed with Ovarian cysts with the advice being to operate immediately. This is carried out and then the doctor notices the “chocolate like adhesions”, a sure sign of Endometriosis. I am not sure why the medical field chooses to use these words to describe Endo, ruining everyone’s favourite snack with their wise-assness. As previously mentioned, Endo is quite hard to diagnose until a doctor has gone in either via laparoscopy or for whatever reason, and early detection is important but are we going to be “going in” on every woman with painful cycles? Gosh! Anyway, back to the matter, another developing occurrence was pain in her arms around the time she has her periods which was first diagnosed as “bad sitting posture” and a topical ointment was prescribed. Just look at that! On further investigation, a now definitive diagnosis is provided - Thoracic Endometriosis. I have never heard of this before, and it shook me up really good so here’s what I learnt.
Thoracic endometriosis is a form of extra-pelvic endometriosis that occurs when lesions spread to the diaphragm and the lungs. Thoracic endometriosis is particularly challenging to identify unless respiratory symptoms are clear and present. Many physicians fail to establish a correlation between thoracic symptoms and a woman’s menstrual cycle. Read more here
Basically, endometrial tissues travel and nobody can tell where the hell they will be end up in. In Aima’s case, it ended up in her lungs causing breathing difficulties such that the simplest of tasks became difficult. Walking up a stair, brushing of teeth, mild exercise, just basic day to day activities that stretch the lungs was tough and then another fainting spell, this time on a toilet break, colliding with the sink and hit her head as she fell, a cut just above her brow. At this time the pain was unbearable, and she couldn’t lie down to sleep, couldn’t laugh, sneeze. The gynae she saw suggested two surgeries, one in the pelvic area to remove endometrial deposits and another in the chest area. Ultimately, she is placed on Zoladex for one year. I am not going to bore you again with this menace of a medication but here I am asking myself if there isn’t something else that will achieve the goal of period ceasing so your body can try and heal yet will not be as devastating as Zoladex. Aima experiences the usual side effects - hot flushes, hair loss, weight gain going from a UK size 6 to 12, insomnia, brain fog and calcium deficit. It would take another one year for the side effects of Zoladex to begin to wear off and yet again, the cycle of pain. This time it is discovered that she has endometrial fluids in her lungs. Ah, when she tells this part, I plead the blood of Jesus because I am shook.
I want to digress here a bit. As we spoke, I was reminded of a friend who was hospitalized for three months with fluids in her lungs. She had just had her heart majorly broken and we all used to laugh at how heart break made her lungs react like this. (Side note, I used we as she joined in too o please) but now I am wondering if perhaps there was more to that situation. Ah, may we not be playing jokes with something as deep as this. Hmmm
Okay back to Aima, she would have several procedures and medication to try and remove the fluids in her lungs; a diuretic oral tab, a pipe inserted into her side where 200 ML of fluid was removed and later on insertion into the lungs with 1.2litres of fluid removed. Sigh. All of these are ways to manage the diagnosis but how does one nip this in the bud? Go back to Zoladex again for a year as the doctor suggests? An ablation surgery at a cool N2 million to burn out the tissues but yet leaving further scaring, an excision surgery which at the cost of $35k is a wow! Look at money now. Phewww! In this what again? Buhari economy. *sprinklestheblood*
How are you coping while you decide which option to pick, I ask? Lifestyle changes. Cutting off anything that can probably trigger more issues - Soy products, Dairy, Meat, Bread, and basically reading up/attending webinars to be better educated. Endometriosis is also often misdiagnosed as irritable bowel syndrome by the way. This is because certain food will aggravate your body system causing not just pain but all other symptoms that can be easily misdiagnosed. I shall add here that when I discovered I had fibroids, I tried a lifestyle change as well - somebody used coffee to swear for me and wine. Basically, the idea is not to stress the liver which is instrumental in balancing out your hormones. I am going to leave this here for today but before I go, I’d like to implore the female readers to be very intentional about observing the changes in your body around your cycle. Download an app (I use clue) and track that thing to bits - sleep pattern, pains if any, tenderness, mood swings, energy levels, bloating, and however else you feel. This will help you notice when there is a switch up in things that calls for medical attention. Dear Men reading, Do not let these topics overwhelm you, spread the word to the women in your life and read up about some of these things. I do not want to be the harbinger of doom, but knowledge really is power.
Dear Aima, thank you for letting us into your life. You are the real definition of courage. Courage is often thought of as facing such situations without fear, but it also involves facing them despite fear. You have embraced life as is and we are all saying up prayers for you as you continue your path to healing and fulfilment.
Thank you all for reading and don’t forget to share so it helps someone and subscribe to get posts in your email. Have a smashing weekend ahead.
Hmm Mima!..I'm blessed to have you as a friend and sister..your strength!!...wow! Love you babe
Sigh. Women go through so much. Let's not even begin to discuss the wahala of misdiagnosis as this is a, 'female', issue. Aima, I salute your courage and that of all the other women going through this. Strength and grace to you all.