My Experience with Endometriosis
When I was 12, I remember my mom telling me how I would have a period one day that would ultimately turn me into "a real woman". Having a period meant that I would be able to have babies. I could tell from a young age that some of my worth would be attached to that ability.
About a year later, I got my first cycle. It was incredibly strange, but this was a life milestone for a young girl. So regardless of how I felt, this had to be normal, right?
By the time I was 16, all I can remember was that my periods had gotten worse with age. I would be greeted by the most unbearable pain, to the point where I would throw up. I was not able to eat during this time, and even simple tasks such as walking felt like an impossible chore. I would always have a high fever followed by night sweats.
Bleeding through an entire pad within 30-45 minutes wasn’t uncommon. I always found it comical when people suggested that a pack of pads was meant to be kept for an entire period, while I would run through an entire pack within a day. Surely all of this is not normal?
For the longest time I was told to stop being “hysterical” and that “every girl has periods and cramps, you are not special”. In retrospect, this was very traumatic and upsetting to know that every adult around me was perfectly okay with seeing me ill every single month because young girls having debilitating pain is seen as “normal”.
It was only when I was 17 that my concerns were taken seriously enough to see a gynaecologist. Based on my symptoms, the doctor suggested that I probably have endometriosis. It was only after the ultrasound that he confirmed that I have a growth on the outer lining of my uterus.
At that very moment, I was altogether relieved, upset, sad, and angry. I knew that something was wrong; I had always known. I couldn’t understand why it took one adult telling another for my pain to be recognized.
What is endometriosis you say? To paraphrase the definition, it’s a disorder whereby the endometrial tissue grows abnormally. Sometimes it’ll grow near or on the reproductive organs, however, there are cases where it grows on the bladder and in the lungs.
It causes dysmenorrhea (severe pain) to the point where some women have to be hospitalized. Some other symptoms include constipation, being nauseous, excessive and abnormal bleeding, high fever and, on the reproductive level, infertility.
Endometriosis also comes in different stages; the severity of symptoms isn’t indicative of which stage you’re in. It’s mostly defined by how much and how far the growth is spreading. So, you could very well be in stage one with all the symptoms, or you could be in stage four with minimal symptoms. Stage 1 is minimal in terms of the presence of visible growth, stage 2 is mild, stage 3 is moderate and lastly, 4 is severe.
An ultrasound, CT scan, MRI, or laparoscopy may be used to determine the presence of endometriosis. Scientists are not too sure whether endometriosis is a gynaecological issue or an autoimmune condition. This is because endometriosis has been seen to promote negative consequences for the immune system, such as imbalances in the immune system. Women with endometriosis also tend to have food sensitivities, intolerances, and allergies.
There currently is no cure for endometriosis, partly because it is difficult to pinpoint its origins.
Although there is no set cure, there are several treatments options available. These include excision surgery, hormonal treatment, birth control, dietary changes, natural herbal treatments, and anti-inflammatories.
Since normal painkillers did not work for me, I was given anti-inflammatories and sleeping pills. This helped for a while. Grade 11 and 12 were the worst years, yet.
As if being a teenager wasn’t difficult enough, I was ALWAYS sick. I would miss weeks of school, and if I went, I’d probably just end up falling asleep in class.
It was in these moments that I would question why a God that loves me would burden me with so much pain when I was only just a child. I ended up underperforming in my last year of high school. Consequently; I had to upgrade my marks the year after. When you’re that young one year feels like a lifetime.
Flash forward to 19, and I was put on birth control to help regulate some of the symptoms. The best part about being on birth control was the fact that my skin cleared up. I looked and felt amazing. The contraceptive I was initially put on also had appetite suppressing features as a side effect.
As a young woman who was influenced by social beauty norms, you can imagine how exciting it was to be the skinny, pretty one.
For the longest time I was in so much pain, I never realized what a toll it took on my self-esteem. Being unable to attend events out of fear that I’d bleed through my clothing and onto furniture, or that I would just start vomiting and crying because the pain had become unbearable.
Compared to my peers I felt stunted socially, but here I was in my late teens to early 20s enjoying being young for once. No cramps, no heavy flow, no fever, just young, happy skinny beautiful me. But of course- like all good things on this earth- nothing lasts forever.
That season lasted about 3 years until I started experiencing the same symptoms again.
Waking up in tears to burning cramps, bleeding through bed sheets again, and being unable to walk. Additionally, I felt as though I was losing my god damn mind while consuming Yazmin. At some point I became so paranoid and anxious, I genuinely thought that I was going to die.
No one ever really talks about how negatively contraceptives affect you. You could be losing your mind but as long as your physical symptoms are gone everyone assumes that you’re doing fine.
I went to go see a doctor and she suggested that I change my contraceptive because the one I was initially recommended was more ideal for younger girls, and I was becoming a woman which is why it wasn’t as effective anymore.
So, I started using different birth control.
The problem with medication and treatment is that you have to use it for a while (3 months) before professionals know whether it’s working for you or not. Had I known that I was going to go on the journey I went on, I would’ve said no to using that birth control.
You know how every medicine comes with side effects, while I was on Nordette I experienced ALL OF THEM. Not to mention, none of the symptoms associated with my endometriosis were being alleviated.
If anything, it exacerbated them even more.
I developed acne on my face, chest, back, legs and arms. I also developed keratosis pilaris on the back of my thighs (to this day, it will not go away), bloating, weight gain in my thighs and arms, excessive sweating, and incredibly oily skin.
The girl that was perfectly thin, free from acne had now become someone I barely even recognized. This transformation all happened within 3 months.
After that, I was switched to another contraceptive called Oralcon. It did very little to get rid of all the symptoms, and as a side effect, it just contributed to my anxiety. At this point, I’d almost given up. I had gone through an entire roller-coaster.
As a student, I didn’t have the money to pay for surgeries and I didn’t have the money for treatments that were a bit more expensive. I’d be lying if I said that I didn’t feel incredibly angry and lonely too.
I’d sit in my bed for days sick, watching people’s Snapchat or Instagram stories. I'd watch how they would be having so much fun, enjoying their youth while I was either crippled by pain or anxiety.
I remember watching a video on YouTube, this woman spoke about how the pain she experienced because of endometriosis contributed to her having no recollection of 3 years of her life.
I felt the same way, but I was never able to verbalize it until I saw that video. So many years passed by, I was still stuck in school, my peers had left, they’d graduated, they’d started jobs and I felt as though I was living the same day on a loop for 3 years straight.
The thought of it brings me to tears. During this time, I started using disposable underwear, I would bleed through all of them. It was humiliating and upsetting.
I’d be going through all of this, and when I’d express to friends and family that I was either too sick or tired to entertain them and their expectations, I’d always be met with “you’re making this up”, “you’re always tired”, “why can’t you just be happy”, “you are so insecure”.
Honestly, I wish I was making it all up.
In 2018 I started using Ovral and I told myself that it’d be the LAST time I would use contraceptives. Coincidentally, during this year I met two women that also struggled with endometriosis, one of whom has become my dearest friend and one of my biggest confidants.
Immediately when I met her, I knew she had endometriosis. She would skip classes, be off-campus for days and when she would attend group meetings for assignments it’s as though she was half present and half somewhere else.
She was always tired and sick, and it felt like I was being weirdly confronted by myself. Getting to know her made me realize how important community is when you’re going through something no one else understands or physically sees.
For the first time, I felt like someone finally truly saw what I was going through. She didn’t feel bad for me, or pity. She just purely empathized, never judged me or looked at me as though I was disgusting.
Although I was going through the wringer, being with and around her made me feel as though everything would be okay. The other woman I met had a severe case of endometriosis.
She had undergone multiple surgeries and has been admitted to the hospital on numerous occasions. She had been through it again and again. It was wildly frightening to see someone go through that.
I’m not one to compare levels of struggle, I’ll be the first to admit that struggle is relative and subjective and no one should EVER tell you that you’re not allowed to be in pain because others are in more pain.
However, that being said, I was for once glad that I had a “smaller” version of endometriosis.
I had gotten sick and tired of seeing health practitioners because I felt as though they were causing me more harm than good. I was a lab rat for almost a decade of my life and I’d had enough.
As humans, we are so far into modern medicine and technology but we can’t effectively treat something like endometriosis without the person suffering. I decided to do my research (as someone that is still studying in the science field, I wouldn’t advise this, but I was at a breaking point and something had to give).
I came across many videos of women living with endometriosis and managing it naturally. Probably 70% of the videos I watched included significant dietary changes. Most of the women were either vegan, low carb, or keto.
By no means is this me saying that going on these diets is the only thing that works, but I’d be lying if I said it didn’t work for me.
I later came across two channels on YouTube. Doctors that had been specializing in low carb and ketogenic diets for almost their entire careers. I got to a point where I decided to try out the ketogenic diet for myself, I had nothing to lose.
This was the last straw for me and I needed it to work. Within the first few months my cramps became minimal, the bleeding reduced significantly, my skin cleared up; furthermore, I’d lost a lot of stubborn weight that I’d been carrying for the longest time.
You’re probably wondering why I don’t just get surgery?
Well, two main reasons:
I do not have the money, plain and simple,
and secondly having surgery to remove growths and lesions does not necessarily mean that it will not grow back.
I know of women that have had the endometriosis removed only for it to grow back onto another organ and/or for the symptoms to be even worse.
Every single one of us is different, and what works for one person may not necessarily work for the next. I know of women that have used birth control for endometriosis and they are thankful for it.
Personally, I want to burn all the birth control companies on this earth, straight to the ground, but that is just my experience.
Ultimately, I am glad that I am physically in a better place, even though I do still struggle mentally.
Maybe that is a side effect of the pills I’ve had to ingest over the years, or maybe it’s an amalgamated consequence of everything I’ve had to physically endure.
Overall, I am hopeful that science will someday be able to clearly define endometriosis and treat it more effectively so that young girls and women will not have to suffer from an invisible condition in silence anymore.