Still Fighting … Like a GIRL !
“Cruel … that’s just cruel.”
Those were the words of a dear family friend, who also happens to be a gynaecologist. He deals with cancers related to gynaecological issues. This statement was in response to me describing my experience on Zoladex for 6 months back in 2015.
For those of you who may not have read my former posts, let me fill you in on a bit of the journey that I have been on. It would be a bit awkward for you to have to pick up the story half-way. You can also check out some of my previous posts to get the full story.
Recap
Hey, I’m Orielia, more affectionately known as Pri, and I am an endometriosis warrior.
This means that I have a chronic illness called endometriosis, which affects 1 in 10 women worldwide. Women with endometriosis often have their uterus lining growing outside of the uterus. While this may be a simple web definition of this illness, any endometriosis sufferer will tell you that it is this and so much more. My first blog post covers a lot of the details and stats about this illness. Unfortunately, I still battle my endometriosis on a daily basis, and it has been over a decade since I was first haphazardly introduced to the idea of this illness.
March is endometriosis awareness month, and I have made it by mission to ensure that anyone and everyone that I interact with is aware of this fact. I have also attempted to release a blog post during this month to detail my painful, but interesting journey as an endo-warrior. Although, I must be honest with you, I have really struggled to find the motivation to write this post and I don’t know why. Okay, I lie, I do know why, so here goes …
Vulnerable vs self-aware
Over the past year, the entire world turned upside down and we don’t even know what the word “normal” means anymore. Things that were once such gigantic hurdles now seem so futile because we all just want to make it out of this pancetta (I know, I know, it’s that other p-word) alive! Being an individual with a chronic illness is tiring — physically, emotionally, and mentally. Despite this year being immensely draining for me, I didn’t feel validated in my pain to somehow have the “right” to post about this. I have probably written this post mentally at least about 10 times, but I never really found the courage and strength to actually put pen to paper.
However, something changed last week, I don’t know what it was exactly, but I am glad that it happened, because it made me realize something that I had always known. The purpose of my articles about this disease was never to parade my pain and suffering, or to evoke sympathy in every reader. No! Writing has helped me to own my journey, to live my truth and to bring awareness to an issue that is a lot more prevalent than most of us realise. So whether the world is falling apart or not, my story is still valid, and I am in no way trying to invalidate the pain and suffering of those around me , as well as my fellow endo-warriors.
Nomadic life is NOT all that and a bag of chips
My last post was published whilst in the first of many lockdowns that the UK was faced with. I was blessed to have an amazing family, who took me in and housed me for 3 weeks before I could be repatriated, back home, to South Africa. As I’d mentioned previously, I was still trying to deal with the side effects of Zoely and as the situation around me got worse, it seemed that stress was a trigger for more pronounced hormone fluctuations. My once clear skin was clear no more! Nope, it had decided to continue with it’s rampage, leaving me with large, cystic breakouts that throbbed and looked as red as Rudolph’s nose. ☹
On April 12th, 2020, after weeks of pleading with the Department of International Relations and Cooperations (DIRCO) and tweeting everyone and everyone who could assist, I was officially granted a place on the first repatriation flight from London, Heathrow to Cape Town, South Africa.
After finally arriving in Cape Town, I spent 14 days in mandatory government quarantine with a daily 30-minute break to stroll the parking lot. Whilst under super strict supervision of course.
The journey thereafter was not exactly rosy. I had to navigate my way from the west to east coast of South Africa whilst the country was in level 5 lockdown. This involved pleading with the South African government, DIRCO, the eSwatini high commission and so forth. After what seemed like FOREVER, I was finally reunited with my loved ones in eSwatini , but not without enduring yet another 14 days of mandatory quarantine. Story of my life !! I know what you’re probably thinking that I’m just raving on about my repatriation journey instead of telling you about my endometriosis … but that’s just it, this whole process affected my body so badly!
Being away from home isn’t always easy, but being away whilst sick, now that’s even worse.
The quote above is how I felt whilst in China when I was constantly ill. So, you’d think that being sick, and being at home would somehow make the whole situation a lot better. I couldn’t have been more wrong. As the days passed and the pressure of the whole COVID-19 situation mounted, I found myself increasingly stressed out and feeling overwhelmed. More so, my skin hadn’t really improved, if anything, the situation had worsened and now, I was suddenly dealing with an even bigger situation.
My cystic acne had gotten so bad and ironically, wearing a mask was both a blessing and a curse. On the one hand, it helped to hide the unwanted, painful visitors on my face, yet on the other hand it just made the situation flare up even more (yes, “maskne” is a real thing folks). On top of all of that, my scalp started to peel. Yeah, not exactly attractive, but unfortunately, this was just another way for my skin to let me know just how annoyed it was that I was on Zoely. Really don’t get why it couldn’t just send me an email, or set up a zoom call, but ANYWAYS.
So, on-top of COVID-19, I was battling the following; regular endo flare ups, occasional nausea, cystic acne and a severely damaged, dry scalp. All of this whilst trying to hold down a PhD over 13’000km away from The University Of Kent. It was just too much.
Being at home made me so gravely aware of how privileged I was to have a loving and supportive family who were going out of their way to support me. It broke my heart to see the look of helplessness on my parents face when they couldn’t “fix” all of this issue for me. It was a team effort really — family bonding now consisted of my parents trying to help me oil my scalp or apply any treatment that we could find to resolve it.
In May 2020, I made an executive decision to take myself off Zoely and to return to Minerva. Although my gynae may have had her best intentions at heart, I look back on that appointment with such regret and such frustration. If only I had done more research. If only I was not so swamped. Maybe I could have prevented my body from the year long turmoil it had to endure as my hormones were thrown for a loop.
Eventually, after trying all the topical acne creams, ointments, and YouTube remedies, I sought more professional help. I was able to have a telephonic appointment with my South African based dermatologist who put me back onto a low dose of Roaccutane. Not my ideal situation, but it is what it is. I began to see slow progress over time with my skin, and thanks to medicated shampoo (and my parents regular oiling) my scalp situation also improved.
In August 2020, I was eventually allowed to cross the border from eSwatini into South Africa and could finally see my gynaecologist in person. Frightened, tired and frustrated, I made my way to the gynae yet again. The ultrasound revealed that everything “looks just fine.” It’s funny, because you would think that these words would comfort me, but instead they just made me more anxious. Because I knew deep down that everything wasn’t just fine, because everything didn’t feel “just fine.”
The return
The storm clouds started to give way, and I started to see some sunshine. After 6 glorious, but also hellish months at home, I found myself on yet another relief flight. This time, back to the UK. This PhD wasn’t going to finish itself and I had to finish the task that I had started, whether or not I had left my heart almost 13’000 km away. But first , QUARANTINE! Okay, more like self-isolation in my apartment. Which meant I celebrated my 27th birthday whilst self-isolating.
Yes, you may all hail me as your quarantine queen, with a combined total of 42 days of Covid-19 quarantine under my belt.
Unsurprisingly, my return to the UK was not as glamorous as I would have hoped, it wasn’t long before things started to spiral even further out of control. The stress of the PhD and frequent endo flares had me looking like an absolute mess. I leant on those closest to me the hardest. I was battling so much at this time that I didn’t think that I could physically make it, but they frequently reminded me of just how strong I was.
Our newest contender up for the title of “ways to make Orielia’s life hard” is a sharp pain on my lower back/pelvic area. This means that sitting on my bed for extended periods of time, sitting on my couch, or even lying in a certain way, leaves me in unbearable amounts of pain. Needless to say, this has had a significant impact on my PhD research as I’ve had to take several breaks from the lab because at times I simply can not deal with this sharp, shooting pain.
I recently purchased some “menstruation patches” online. They’re supposed to have some herbs in them which helps with your menstrual cramps. Well, the patches worked for all of 2 days before they gave me a lovely, blotchy, and extremely itchy rash on my lower abdomen which has now left a beautiful scar -_- .
Dealing with the pain
I have never been one to take painkillers. So, the patches were the final straw. After reading different sources and seeing numerous reviews of the benefits of CBD for endometriosis symptoms, I went out on a limb and got myself a CBD vape pen. The pens do not contain any nicotine and have really small amounts of CBD (30–50 mg). I realize that this may not be conventional for many people, but as someone who suffers with chronic pain, finding something that can help even just a fraction, is like finding gold. Really hoping these pens are my gold, or at the very least my gold-plated treasure, because I’m really tired of living this pain-ridden life. This is not what I signed up for.
I really would haveloved to have ended this post on a super positive note, telling you how strong I and how I am owning my journey. But the truth of the matter is that this past year has thrown me a few more curve balls than I felt I could dodge. As it stands, I need to see a GP here in the UK and try to get referred to a specialist because the sharp pain down the back of my legs and lower back may indicate endometrial growth there which would require ablation surgery. Ablation surgery is a procedure to remove excess endometrial tissue by using heat energy to destroy the cells. I know, fun times (rolls eyes)!
In the interim, since I can’t travel home due to B. 1.351 (the South African COVID-19 variant), I am unable to get a new stash of Minerva, because it would take forever to get this shipped to me, due to the red tape and legal hurdles that come with transporting prescription pills across borders. This means that I have to switch over to a local substitute.
Truth be told, I am both terrified and frustrated that this is the reality of my life.
We all just wanna be loved
One thing I would like to highlight is the importance of support. On one of our many pep-talk phone calls, my best-friend asked me a really important question; “What do you need from us as your friends and family, for you to survive this PhD whilst being so far away?”
There were quite a few times when I felt like I was drowning. If it weren’t for my loved ones and my faith, I really don’t think I would’ve made it out of my dark hole. Everyone wants to be heard, to be loved, and to be supported. Especially this year, when everything is upside down and so isolating, supporting each other is imperative. If you know someone suffering with endometriosis, then I would implore you to engage with them on this topic. Talking about endometriosis can be hard, and one may initially be dealing with feelings of frustration and helplessness, but ultimately, having these painful conversations brings us one step closer to our healing and accepting our reality. I know that you may feel helpless too, but your support really does help us feel validated and heard!
We all have a part to play in educating others about taboo topics such as endometriosis and good menstrual health. Please remember that this happens to every 1 in 10 women. That could very easily be your sister, partner, mother, aunt, cousin or friend.
The world is in a really tough space right now and we all just need to show up for one another. Be patient with your friends because you have no idea what kind of demon they’re facing.
So, if given the choice between being right and being kind , I hope you will choose to be kind !
