LIVING WITH AN UNDIAGNOSED CONDITION.
* Please note this post is quite graphic *
For the last 10 years I’ve struggled with issues with my bowel and lady bits. Pain during sex, pain after sex, persistent diarrhoea and frequent constipation, mucus, unbearable period pains, fainting, losing control of my bowels, back pain, low blood sugar, acid reflux, this list is not exhausted - but I am.
I’ve been in and out of my GP’s and hospitals more times than I dare to count and a decade on we still don’t have an answer.
I’ll always be so grateful for the NHS - we are so unbelievably lucky to be blessed with their care, but my quality of life is diminishing before my eyes and I’m stuck between wanting to fight for my health and giving up completely.
What you see on the internet is always just a fraction of someones life. But I like to think I’m honest with you lot and whilst I’ll share my outfit on instagram, I still talk about my mental health and how important your smear test is. That being said, I think it’s still pretty easy to forget that even though I may look alright, appearing seemingly healthy, I’m really not.
People have commented on my weight for forever - ‘you must not eat anything to be that skinny’, when in fact, I quite literally can’t keep anything I eat in my digestive system for longer than an hour. Not so glamorous or enviable when you put it like that, is it?
Two days before these photos were taken I was in A&E, I’d fainted in the night, crashed to the floor before I could make it to the bathroom and totally lost control of my bowels. At 28 years old, having the continence of a 90 year old is seriously depressing - all I can think is this shouldn’t be happening to me.
It’s not something that happens daily, this fainting lark, but it is happening more and more and I feel utterly done in by how much it takes from my body, my mind, each time it happens.
I fear my periods each time they arrive, will I pass out? Will I be bed-ridden for a week? But to be honest, I’m wiped pretty much all of the time anyway. Most days I will need to nap and for every day out of the house I’ll need two in. I’m learning as I go to manage my own body and I know my capabilities.
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I’ve had every bowel test you could imagine sigmoidoscopy, colonoscopy and ultrasounds, blood tests, scans and MRI’s on top to no avail.
I’m pretty sure that it’s Endometriosis - an incurable condition in which the tissues that normally line the inside of your uterus, grow outside of it. It’s incredibly painful and debilitating and can cause a whole host of problems, not limited to just the uterus itself.
I know we’re told not to google our symptoms, but when nearly half of your life has been spent unwell, you need some kind of outlet to at least guess. All of my symptoms point to it and historically it takes women 5-7 years to get a diagnosis. I’ve visited an array of gynaecologists, all of which have advised that anything else needs to be ruled out first.
Perhaps it’s IBS? Nope. Perhaps it’s Chrons? Nope. Colitis? Nope. Perhaps your Celiac? Nope. I could continue.
Endometriosis is diagnosed through an operation, called a laparoscopy - hence the hesitation for the NHS to jump straight to it as a diagnosis. They have to eliminate the less expensive, explorative options before they’ll consider operating on you. Which I get, operations cost money, and operations are dangerous, so it makes sense.
It just doesn’t help when month after month and appointment after appointment you are presented with ‘there’s nothing wrong here’. Of course it’s amazing to eliminate other diseases, but not when there’s no answer in its place.
I would love more than anything to know I can wake up each day and have normal bowel habits, that I can stay away from home without fear of being incredibly ill. But the more time that goes by, the more I understand that’s not a possibility - and so what I really want, I mean, what I realistically want for myself, is to be able to manage the discomfort, the pain, the unavoidable relapses. And that, doesn’t feel like too much to ask.
I wanted to share this post half as an explanation and half as reassurance for anyone else going through something similar, please know that you’re not alone. I know there’s minimal comfort in that, and actually, how hideous is it that so many of us are suffering without answers. But it is important that we speak out, that our voices are heard and that we continue to raise awareness for undiagnosed conditions.
I do find it hard to stay determined when I face so many brick walls, but I won’t give up. I know that there must be an answer and that there IS a way for me to have a better quality of life.
So, here’s to the next fight. I'll keep on being ready.
PHOTOGRAPHY BY ALEXANDRA CAMERON.
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