Living as an Endo-Warrior

Living as an EndoWarrior

In March 2018 I shared my EndoStory with the world and it has taken me a whole 2 years to write a follow-up piece. Don’t get me wrong, it’s not as though nothing has happened in the past 2 years, trust me, A LOT has happened… it’s just that I haven’t felt quite ready to follow-up, until now.

After opening up and sharing my story the first time I felt that whatever came next had to at least show some kind of significant improvement — both physically and mentally, but unfortunately for me the reality is otherwise. Alas, here I am 2 years later, in my quaint, one-bedroom apartment in Canterbury, England. Self-isolating for both my safety and of those around me. Amidst the COVID-19 pandemic that is — in some ways, very similar to a particular disease that I am very well acquainted with — gradually wreaking havoc across the planet from the inside out. And once again, I have found the strength to share my truth with the world.

Previously On: “Picking Up The Endo-pieces”…

Alright, let’s recap. When I wrote the initial post I was still based in South Africa. I was working at the CSIR, whilst completing my Masters degree in Chemistry, at the University of Johannesburg. At this point in time I still wasn’t too sure of exactly what move I was going to make next in life.

Publishing my article and finally getting my story out there left me feeling extremely vulnerable and nervous, but these feelings quickly subsided as people began to applaud my bravery and confide in me about how they too were suffering from a gynecological issue that was weighing them down heavily. The greatest thing I found after breaking through that ceiling was a whole host of women in South Africa who also suffered from endometriosis and welcomed me lovingly into their “Endowarriors South Africa” support group on Facebook. This platform has been phenomenal, and because of this, I’m continually reminded of the fact that there truly is strength in numbers.

I was nearing the completion of my masters during this period, so the support and encouragement I received couldn’t have come at a better time. At the end of June 2018, I submitted my thesis. Then, just 3 short weeks after closing one massive chapter of my life, I quickly opened up another one by hopping on a plane headed for Shanghai, China, to teach English at a company called EF English First. It was wild, I know, but it was something I just had to do. And as bizarre as this move may have been, in hindsight, it was one of the best decisions I have ever made in my life.

Acclimatizing To The East : My Short-Term Move To China

Life in China was amazing! The convenience and the safety of my life there was something out of my wildest dreams and it wasn’t until the “honeymoon phase” started wearing off after about two and a half months in that I really started to notice my body fighting back against my new environment, half-way across the world. It started off with some unbearable cramps and later, gradually progressed to nausea. And this wasn’t like any nausea that I’d ever had previously, no, not at all. This was absolutely horrible, and to make matters worse, at one point in time it was as if anything and everything that I ate left me feeling nauseous, even POPCORN!?! Anyone that knows me knows that popcorn is everything!! So this was very difficult for me to accept.

In an attempt to reduce the retaliation from my digestive system and curb the onslaught from my newfound IBS symptoms, I tried to monitor what I would eat by sticking to healthier, less oily foods in hopes that my stomach would adjust. Changing my diet wasn’t easy because most of the standard things that I would eat back at home in South Africa were hard to come by on this side of the world. This made it even harder to actually cook something healthy without succumbing to the temptation of just ordering takeout with ELEME, a popular Chinese take out service.

My immune system really took a hit whilst I was in China. I was sick more than I was healthy, and I was slowly becoming a regular at my local hospital. Fatigue became a very real thing during this time and the extremely high levels of pollution in Shanghai did not help my weakened immune system one bit. I had only ever suffered from such extreme fatigue when I was on Zoladex years ago, so it took me by surprise when I was just flat out drained after a good night’s rest.

Hesitation and Confrontation: Addressing The Elephant In The Womb

Being away from home isn’t always easy, but being away whilst sick, now that’s even worse. Given the language barrier and the lack of medical records, I made the decision not to see a gynecologist whilst in Shanghai. This meant that I had to wait about 9 months, until I was back home, before I could fully evaluate what was actually going on with my body. I’ll never forget helplessly crying in the shower one day because I could feel that something was so wrong inside, but I had no way of working out what it was.

Despite all the daring and adventurous things I have done in my life, visiting my gynae is still one of the things that scare me the most. Nevertheless, when I finally returned to South Africa in July 2019 I went to my gynae, Dr. Avril Moodley, in search of much-needed answers. That seemingly infinite period of time where all I can do is wait and watch her face as she does my scan is always the most nerve-wracking for me. As my mind races non-stop and jumps from one conclusion to another, with the worst case being a gynaecological laparoscopy, a surgical procedure to remove all the endo infected tissue in my body.

Thankfully there was no need for surgery just yet. She decided that after almost 10 years, my pill Minerva and I had to part ways and she recommended that I change over to a new pill to try to ease some of my symptoms as well as shorten my cycle. I was nervous and a bit terrified actually. Thinking back to the way I had suffered whilst on Zoladex, I wasn’t quite ready to go down the path of messing with my hormones again, but if I wanted to be in less pain then I had to be willing to at least try. She then proceeded to once again remind me that my biological clock was ticking and that I was “running out of time”. And I, once again, left her office feeling somewhat emotionless, because being faced with the fact that I need to fast-track my life and have children in the near future is the last thing I need to be dealing with right now.

Fear and Uncertainty: A Change In Medication

As with all oral contraceptives, Zoely has a decent list of side-effects, with acne and depression being the most common. Determined not to let this new pill get the better of me, I took to meditating for 5 minutes once a day using guided meditation, with an app called Deep Meditation. Given that I was set to move to the UK to begin my PhD in Chemistry at the University of Kent in about a month, it wasn’t an ideal time for me to be feeling overwhelmed and depressed. I knew very well that I had to exercise an extreme level of mental fortitude just to pull through.

At this trying time with so many unknowns and the fear of losing myself to a new contraceptive, I took comfort in the words of my fellow Endo warriors who could attest to a decrease in pain after switching to Zoely. It was in these moments of uncertainty and fear that I found myself reliant on my support structure, and I’m so blessed to have such special humans who have been so willing to listen to me lament (even if it was for the 4th time in the same week) about my fears of switching pills and moving abroad.

I started on Zoely about a month before I began my PhD. The initial stages were not bad at all. Unlike on Minerva where I had gained weight, fallen victim to spontaneous mood swings, crying fits, and nausea, the initial transition to Zoely seemed fairly easy … or so I thought.

Acclimatizing To The West : My Long-Term Move To The UK

I moved to the UK in September 2019 and within 3 months of settling in I could already feel my body fighting back once again. It was a familiar feeling and it took me back to my days in Shanghai of desperately pleading with my uterus to cooperate just so I could get to work.

The fatigue was the hardest!! If I thought I had it bad in Shanghai, then I had no idea what was coming. Fatigue with endo is very different from normal exhaustion. After a long and tiring day, if you’re exhausted in the conventional manner, and you’re able to get a good night’s sleep of about 7 or 8 hours, you will most likely wake up feeling refreshed the next day. Endo-related fatigue is different. I found myself sleeping for +9 hours and then still fighting with my body the following morning for 2 more hours just to get out of bed. It was as if it was physically impossible to move. My brain knew I had to get up, but my body just couldn’t do it.

The bloating was also an unpleasant surprise. Yes, I had been bloated prior to this, but never before had I tried on 5 pairs of my own pants yet been unable to fit into any of them because my “endo-belly” was too big. It was heart-breaking, especially because my current working environment requires me to wear pants for my own personal safety. I felt uncomfortable and ever-conscious of my bloating. What made this even worse was that I seemed to have almost immediate IBS with just about any kind of dairy. Like, come ooooon endometriosis!!! First my popcorn and now my milk? Can a girl get a break and just have a chai latte in peace?

It’s been 7 months since I first moved to the UK and these past 7 months have been filled with so many different emotions. There have been days when walking from my 1st-floor office to my 2nd-floor lab has seemed like an unbearable task due to the pain running down my lower back and legs. My skin has gone on a full-on rampage after years of battling to get clear skin and this frustrates me more than I can even explain. Also, after my recent international escapades, I’ve come to terms with the fact that my body just isn’t a fan of my desire to live in different countries.

Maintaining Inner Peace: Searching For The Silver Lining

It hasn’t been all bad however, as there have also been good days as well and these are the ones I hold dearest to my heart. Like those rare days where I can rock my high-waisted jeans without feeling like my bloated “endo-belly” would pop the buttons right off. Or the days where I can eat what I want to eat without the fear of my body retaliating in full-force. Yes, these are the true highlights!

Living with endometriosis is never easy and every time my body acts up I am reminded that despite how hard I may try, I really can’t control everything, and that’s okay. I’ve been fortunate enough to have people around me who love and support me unconditionally, and on the days when I can’t love myself, they remind me that I am enough. It’s hard being away from them, but I’m using the time to remind myself that I am strong, and I am capable of pulling through. I’m grateful that my symptoms haven’t worsened drastically and that I am still able to cope with whatever this disease decides to throw at me.

I’m still 1 in 10. I still battle my endometriosis daily. I still cry and feel broken sometimes. But, I’m learning to laugh at the things that once broke me and I am continuously finding ways to adjust to these new side effects. I may not be able to fit into some of the pants in my cupboard, but that’s okay, it’s an excuse to get some new pants, and it’s perfectly fine if they have to be the stretchy waist-band kind, like the ones in the maternity section. Who knows, I might even start a new trend.

Anyways, there you have it, this is my story, and this is my life. Granted, due to endometriosis, it may not be panning out exactly as I had planned it to be, but the truth is that I still have a long life ahead of me, and I am going to do my very best to make the most out of it, regardless.

So, if anyone needs me, I’ll be right here in my maternity pants, enjoying my chai latte.