Picking up the endo-pieces: My personal battle with Endometriosis

The confession

This post has been a long time coming, and I figured that since it is currently Endometriosis Awareness Month*, I should pluck up the courage and just share my story. So here goes …

“Hey, I’m Orielia, and I am an endometriosis warrior.”

Sorry, hold on… endometri-what?

At this point I am sure many of you are thinking “what’s endometriosis?” Well, according to the generic, web-based definition, endometriosis is a gynecological issue wherein the uterus lining grows outside of the uterus. However, anyone who suffers from endometriosis will tell you that it is this, and so much more! Some of the most common symptoms of endometriosis include, but are not limited to:

• severe menstrual cramps
• nausea
• vomiting, as well as
• bowel and urinary problems.

However, this doesn’t even come close in explaining the turmoil that most women face monthly, if not daily, as a result of their endometriosis.

Some facts

Endometriosis affects 6–10% of all women in reproductive age worldwide as the symptoms are usually prevalent during these reproductive years. This means that in 2018 approximately 176 million women worldwide are affected by this condition. The sad reality is that many women go undiagnosed for years, with doctors telling them that it is probably irritable bowel syndrome (IBS) or pelvic inflammatory disease (PID). A few doctors just brush it off completely and they confidently tell their distressed and confused patients that this is just mother nature taking her course on the fragile female body.

The diagnosis

Well my endo journey started about 8 years ago, at the tender age of 16, when a gynecologist* haphazardly diagnosed me with the disease. I was still in the middle of my turbulent teenage years, where dealing with the academic pressure of high school was on the top of my priority list. My monthly cycle was quite severe around this time and it had been for a while, but because I was extremely misinformed about the severity of this issue, I didn’t really take this diagnosis very seriously and the gynae* didn’t express much concern either.

I used to get very ill each and every month around the time of my cycle and I initially thought it was due to some ridiculous coincidence, but after some time I realized that there was way too much of a correlation for it to be completely coincidental. So after some reluctant introspection and in-depth analysis, I came to the disheartening conclusion that it must have been linked to some sort of gynecological issue. Around this time I was also dealing with my struggles with acne and I had been taking Minerva 35 — an oral contraceptive — as a treatment for my acne. Fortunately for me, this temporary solution seemed to be killing 2 birds with one stone — firstly it was minimizing the joyful, periodic effects of womanhood and secondly it was curbing my terrible acne, which was having an extremely negative impact on my life at the time.

Initially, all seemed to be fine and dandy for quite some time, but as my body familiarized itself with the Minerva, I noticed the return of my symptoms, which were now coupled with irregular cycles. So off I went to the gynae again. This time, the diagnosis was not as haphazard as before, and it was agreed that I would undergo a laparoscopy to reach a final diagnosis. A laparoscopy is a procedure wherein a small incision is made in the naval and a camera is inserted. This procedure allows for an accurate diagnosis as it provides a view of the abdominal organs. Unfortunately, the conclusion of this procedure was that the initial gynae had indeed been correct and I, Orielia Egambaram, did indeed have endometriosis.

*Heavy sigh*

GREAT !!!!

So what Next?

It was decided that for 6 months I would be treated with an injection called Zolodex which suppresses the production of sex hormones. It was hoped that this would reduce the amount of estrogen produced by my body, which would somehow “shrink” the growth of the endometriosis cells and make my life a bit more bearable in the long run. This sounds crazy now, but it was believable at the time.

So Zolodex would be my savior, wonderful. Although there were two minor issues; firstly, the depletion of my estrogen meant that theoretically I was now experiencing menopausal symptoms, and secondly, I would have to get this injection every 28 days!

Those 6 months were amongst the worst 6 months of my life. Not only was I dealing with the effects of my endometriosis, but I also had to deal with menopause when I was only 20 years old. That’s a whole 20 years too early!!! Also, it turns out that Zolodex was a pellet which would break down in my system over the 28 days. Therefore, the needle was HUGE, and this is by no means an exaggeration, the needle was so large that my gynae — who happened to be a good family friend — insisted that I should get a local anesthetic prior to receiving the Zolodex shot in my tummy. Everyday was a struggle, as my moods would fluctuate consistently. I truly believe that had it not been for my firm Christian upbringing and my relationship with Christ, I would’ve sunk into a deep, dark hole of complete sadness and depression.

I hated what the Zolodex — this so-called savior — was doing to my body. I hated how I was always tired, even when I had slept for hours on end. The hot flushes were the worst — especially considering that I am a scientist who would spend up to 6 hours in a lab each day with hazardous chemicals, wearing a full bodied lab coat!

The calm before the storm

When the 6 months finally came to an end I was over the moon and I had a great sense of overwhelming relief. However, it still took a few more months for my body to fully recover. The worst part of this whole process was that it was starting to affect my academics as I was underperforming at University. I was completely terrified of the prospect of not being able to successfully complete my degree.

Spoiler alert: I did complete my degree, thankfully, and as of writing this post I am almost done with my master’s! Whoop, whoop!

The following months were a lot more bearable. The monthly turmoil had temporarily subsided, although I certainly wouldn’t say that I was ‘cured’, because I know full-well that I will never be cured of this dreaded disease. But as long as my symptoms were at bay, I was happy.

The storm

Unfortunately my happiness was very short lived. Only 1 year had passed until I started to feel miserable again. The pain was all too familiar. I was grumpy, bloated and frustrated all at the same time. My emotional turmoil was far worse, and what bothered me the most was that I really couldn’t understand why I had to endure so much at such a young age. Isn’t this supposed to be the part where I get rewarded for focusing on my studies and not falling pregnant?! Yet, instead I was being tortured and punished, seemingly for just being me. At this point my biggest fear was going to see another gynae — I really didn’t want to have to sit across from someone, only to have them tell me that I would be fighting the same demon for years to come.

By April 2016 I could no longer bear it. I had spent nights writhing in pain and studying literally with my bum in the air (yes I know this is an awkward position but it actually brought my body a lot of comfort and relief), a posture I also utilised when I studied for my final matric exams. I found a new gynae, one that was closer to me, which would be useful in the case of an emergency. My first visit to her was far from pleasant. I remember sitting in her rooms hoping that she would have good news for me and that she would reach a new diagnosis, prescribe me some magical medication, solve all my problems and make it all better. Alas, her examination confirmed the prior suspicions that I did indeed have endometriosis. However, without performing another laparoscopy she couldn’t determine what stage I was at.

With a heavy heart I sat and listened as she told me how my treatment on Zolodex may have had little to no effect whatsoever on the overall condition. So yes, essentially I just endured 6 of the worst months of my entire life and it may have all been for nothing!! The conclusion of our meeting was that I would remain on Minerva indefinitely, as my body was already quite familiar with this contraceptive. I had been on it for 5 years at this point. She recommended that the only time I should stop taking this medication is when I want to start a family, an uncontrollable, innate desire that the majority of females on this Earth can relate to. An ideal that was gradually being threatened by this disease.

It had been a draining appointment, but I took comfort in the fact that the condition technically hadn’t worsened. Nevertheless, I left feeling somewhat despondent. Fortunately, as the months passed I didn’t notice anything out of the ordinary — I was still faced with the monthly turmoil, but the pain wasn’t anything new to me. Around this time I started to wean myself off of the Minerva temporarily as I was on a number of different treatments for other unrelated issues and I felt as though my body could really do with a break. It was during this time that I made a peculiar observation: my cycle was no longer consistent. Mind you, I had experienced moments in the past where I would have irregular cycles, or not have them at all, but when I was on Minerva things were much more regular.

I reported my findings to my gynae and the concern on her face was immediately apparent. After undergoing a quick and routine examination it was now the daunting moment when I would have to find out what was actually wrong. Her concern was that by 24, after several years on an oral contraceptive, my body was not responding “normally” as expected. She suspected that my endometriosis may be coupled with another common gynecological issue known as Polycystic Ovarian Syndrome* (PICOS)… what a delight! This wasn’t a final diagnosis though. She wanted further blood work to be done in order to confirm her findings.

Painful conversations

Suddenly I felt numb. I was barely coping with the effects of my endometriosis; how could I possibly cope with another issue? Faced with the prospect of having to deal with endometriosis and PICOS (as if being diagnosed with just one of the two was not enough) my gynae calmly sat me down, looked me in the eye and asked if there was any chance that I could try to fall pregnant by 26 (i.e in 2 years), in response I scoffed in her face and told her that this was a completely ridiculous idea. At 24, whilst some of my age-mates had children and/or husbands and potential long-term partners, I had 2 degrees and a budding academic career which I was so deeply devoted to. I was also in the middle of my MSc with great intent on pursuing a PhD. So, falling pregnant and having a family wasn’t on the cards for me, at least not yet. She then asked if I thought it possible to try for kids at 28, at which I immediately scoffed again, before explaining my reasoning to her.

The subsequent exchange was even more painful than when she had mentioned her speculation of me having PICOS. She was worried about the viability of my eggs. Considering that my uterus was already a hostile environment and that my fertility may be compromised, she wasn’t sure if things would get better in time. So rather than having the prospect of impotency catch me by surprise at a later stage, she wanted to prepare me for all possibilities, well in advance. At this point we began discussing potentially freezing my eggs and all the options which were available to me. It was beyond daunting and I was emotionally numb. The conclusion of our appointment was that I would go for blood-work to confirm the PICOS and I would remain on Minerva until I was ready to eventually start a family.

As I sat in my car after the appointment, for about 30 minutes straight, the tears just flowed down my face. I am pretty sure that everyone around me thought that I was losing it, and to be honest, I wasn’t even bothered by that, I mean maybe I was losing it. I felt like everything around me was standing still, and that it was just me and the harsh reality of my “broken uterus.” I was frustrated, hurt, defeated and tired all at the same time. I really didn’t understand why God would make me endure so much?

Spoiler alert: My blood work came back clear, and it seems that I actually do not have PICOS :D. (Thank God!)

The feeling of brokeness

Every day is still a battle with my endometriosis and it is so much more than just the physical pain and discomfort, as terrible as this is on it’s own. Having endometriosis has been an extremely painful journey for me; and it is a journey that I was initially very embarrassed about. I felt ashamed and embarrassed about it because I felt broken. I felt broken for potentially not being able to do the one thing that sets females apart from our male counterparts — the ability to bear children.

Those who know me will be quick to describe me as an extremely academically oriented individual and somehow having endometriosis has fueled my passion for academics even further, and this diagnosis has provided me with even more of a motivation and drive to establish a solid career in my field of Chemistry.

I may not be able to control what is going on in my body internally, but by working towards a solid career in a field that I am passionate about, I can at least ensure that my external world is comfortable, happy and at peace. As challenging as my academic journey has been so far, it has certainly provided me with some sort of solace, in that I can at least have a bit of control over my life, control that is not impacted by malfunctioning hormones or rebellious internal organs

Acceptance

As I have grown older, the journey hasn’t become any easier, I have simply become better at dealing with it. I have learnt to love myself as I am, and I know that it sounds cliché, but trust me, it really is necessary. Also, I stopped thinking of myself as the only broken human and embraced that fact that everyone is in fact broken and that is is only by accepting this brokenness, that we can allow the light to get through. It really has taken its time, and I am well aware that my journey is far from complete. I still have bad days where I am so scared of my future and the mere prospect of potential motherhood that I quickly push the thought out of my mind and instead focus my attention on what is right in front of me.

Anxiety aside, I have eventually come to accept that this is the hand that I was dealt, and the best that I can do with this situation is to own it wholeheartedly and embrace all the lessons that I learn from it.

Our journeys are all different, and that is the beauty of it. I mean let’s be honest, this life would be excruciatingly boring if we all had the exact same story to tell. Own your journey, and when you are ready, share it… You never know who may be encouraged to do the same.

“I am only one, but I am one. I cannot do everything, but I can do something. I won’t let what I can not do interfere with what I can do. “ — Edward E. Hale

Some definitions for the uninitiated:

Gynecologist: A physician or surgeon qualified to deal with the functions and diseases specific to women and girls, especially those affecting the reproductive system.

Gynae: Cool people slang for the term ‘gynecologist’.

Polycystic ovary syndrome (PCOS): A hormonal disorder common among women of reproductive age. Women with PCOS may have infrequent or prolonged menstrual periods or excess male hormone (androgen) levels. The ovaries may develop numerous small collections of fluid (follicles) and fail to regularly release eggs.

Endometriosis Awareness Month takes place in the month of March each year.