by Jessica Biancon
One of the biggest impacts of endometriosis is not necessarily the symptoms, but being misunderstood. My journey has been a lonely one, marred by misdiagnosis, stigmatisation and limited awareness and I'm sad to say that I'm not the only one feeling this way.
Even though it’s been a tough road, I have accepted endo as a part of my life and nowadays discuss it freely and unashamedly. In sharing my personal experience, I hope that fellow endo sufferers champions may find solace in knowing that you’re not alone. For the inquisitive readers doing their research (maybe to understand what a loved one is going through), I hope it gives you the insight you’re looking for.
What is endometriosis?
For reference, endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus, leading to inflammation and scar tissue forming in the pelvic region and elsewhere in the body.
The problem with endometriosis is that we don’t really know much about it yet. Everyone who has endo knows that it comes with a laundry list of health issues that tend to be overlooked or dismissed because they seem unrelated.
Having endometriosis means having a condition that profoundly impacts day-to-day life, where at times it feels as though no one understands what you’re going through both medically, physically and emotionally.
Endo is so much more than a bad period
Like a lot of medical conditions, it’s difficult for people to relate if they don’t have endometriosis themselves. Try explaining a colour to someone who can’t see colour.
For me, endo feels like a thousand white hot knives boring into my stomach, it's an intense ache that runs through my pelvis and into my legs, it's the savage jolts of pain in my stomach that can leave me on my knees unable to stand.
Some days are crippling to the point where I can’t function. I’m keeled over in agony with something that often gets categorised in the same vein as the less enigmatic ‘period pains.’ I get the joy of both, and it’s not the same. It’s not a one-size-fits all situation. Every experience is unique and we need to understand that.
A long journey of seemingly unrelated symptoms
When I was 18, I had my first experience with endo, lying on the floor of the lounge room clutching my stomach with no idea what was wrong. I was growing up in Tasmania and the medical industry there was ignorant. It was passed off as a reaction to bad food, so I was told to go home.
Over the following 10 years I experienced the same treatment, brushing me aside as the symptoms got worse and worse. I started developing migraines and by the time I was 28 and living in Noosa, I had an attack that left me paralysed. I couldn't move, I couldn't talk, my body was in shock and I was rushed to hospital. It was then that the medical industry started taking me seriously.
A diagnosis of endometriosis put my mind at ease briefly but to be told that no one could explain the (now more frequent) paralysis attacks left me feeling more and more concerned (especially as the episodes got worse and rendered me incapable of stringing a sentence together without forgetting my words or stuttering endlessly). The two didn’t seem related, but deep down I knew they were.
Fast-forward to today
4 years of tests, operations, what's felt like 100 different doctors and am I any better off?
No. To this day no one can tell me where the paralysis attacks are coming from and how exactly they link to my endo flare-ups.
With an endless spiral of doubting my capabilities, not trusting my body, feeling helpless in my future and career and knowing that I will never have a normal relationship where I won't rely on my partner's help to lift me up when I collapse, monitor my breathing when I'm out and emotionally support me, it's hard not to end up in a bottomless pit of depression.
The thing is, I know I'm not the only one suffering from unexplainable paralysis attacks, and most of the women I know who share this illness also suffer from endo. Even though there’s still a lack of research and scientific evidence, I can't help but pair the two together somehow.
Trying to stay positive - let’s talk about endo
With a condition that's gradually getting worse and no one having proper answers, it’s a f*#king scary outlook, but I remain hopeful.
Whilst each journey is a unique and individual experience, it’s reassuring that there is more visibility of endometriosis and less stigmatisation. It’s validating being able to talk to a friend about it, where my friend might say ‘Oh, you have endo? Me, too.’
Normalising and feeling understood definitely helps emotionally. Being able to talk to those with endo and other women’s health conditions about experiences and sharing pain management tips feels cathartic.
How I manage my endo
Everyone gets by in different ways, each as individual as the next. How am I managing my pain?
I’m still trying to figure it out, but some things have helped over time. Namely:
- Talking to friends and family about what I’m going through and accepting help.
- Standing up for myself and persisting to find a doctor that listens and takes my experience seriously.
- Swearing endlessly when the stuttering starts, at the very least it provides amusement for myself.
- Prioritising my mental health and allowing myself to rest when I need it.
- And lastly, applying heat to soothe my pain during flare-ups.
I used to stuff a plush alligator wheat bag inside the waistband of my leggings. If I needed to get up, I’d walk around with an alligator poking his head out of my pants. I’ve named him Copernicus. Not particularly sexy, or ideal when leaving the house, but it’s cute.
Recently though, I came across Lotties:
Pants with a discreet pocket for a hot water bottle (or an alligator wheat bag named Copernicus) without having to worry about my leggings falling down. For me they’ve been a game changer. The silhouette is great and versatile for both professional and casual outfits but best of all, they soothe the pain. Easy on the waist, comforting on the stomach.
Hopefully, in reading this you’ve gained a little more understanding of how wild and different endometriosis can be. I encourage you to approach endo with an open mind and really listen when someone shares what they’re going through.
If you suffer from endo, I hope you feel less alone after reading my story, because as scary and isolating as it can make you feel, know that we’re going through it together.
If you’d like to share your story with me, you can comment below or reach me via hello@selfcared.com.au.
You can browse Jessica's favourite products for
comfort and relief in our ENDO EDIT.
