Written by Aimee from The E Word
Endometriosis. Never heard of it? You’re not alone. Considering 1 in 10 women in the UK suffer from it, it surprises me how little it’s actually spoken about.
Endometriosis is a disease in which tissue that normally lines the inside of your uterus (the endometrium) grows outside of your uterus, causing numerous different painful symptoms. As it’s Endometriosis Awareness Month, I’d thought I’d share my story…
I am 1 in 10. My story began when I was 18, I had just moved away for uni, and I was half way through my first year. My symptoms began as stomach aches, not severe but enough to make me want to skip a few lectures here and there. After suffering for a couple of months I went for my annual pill check up at my doctors and mentioned it to the nurse, she told me to make a food diary for a week then make a doctors appointment. So I did.
My first appointment with my doctors came around, and with my food diary in hand I was determined to get to the bottom of what was going on, at this point the stomach pains had gotten worse and I was starting to miss a considerable amount of uni.
My doctor looked over my food diary, did some blood tests and told me it was due to alcohol consumption (my liver function was incredibly low) believing this, I abstained from alcohol for 6 months, but the pain didn’t go away.
My next 4 trips to the doctors consisted of blood tests, ultra sound scans and urine samples. The next diagnosis was stomach ulcers and a kidney infection.
During this time my pain had gotten worse, is began to radiate up my back and down my thighs, and on bad days I physically couldn’t move. I also started to suffer from extreme anxiety, I didn’t want to go out incase I had a flare up and was unable to get home.
21 years old and post uni, I started a Visual Merchandising job back home, which was very physically demanding, and my body just couldn’t keep up. My lowest point was crying in agony on my mum’s sofa, and my boyfriend decided enough was enough and carted me off to hospital.
I was seen by an emergency GP who told me I had appendicitis and would be transferred to a different hospital for surgery. When I arrived in hospital I was subject to a 4 hour wait, only when I had actually passed out on the floor and thrown up all over myself was I seen, just to be told, there was no appendicitis and I had to go home and be reviewed on Monday.
Monday came and I went back to hospital for a CT scan. The results of this were quite terrifying, I had numerous cysts both around my ovaries, and one of them had twisted. I was referred to a gynecologist for surgery.
31st August 2016 I was up early and ready for my operation (which was actually the best sleep id had in a long time). Afterwards, my surgeon came to tell me it had been a success, but he had, and in his words ‘a very unfortunate diagnosis for me’.
And that’s where my true Endo story began.
During the surgery he had managed to remove some of the tissue, but some of it had become fused to my bowel. Which was much more complicated surgery which I hadn’t signed up for.
3 years later…
My gynaecologist and I see each other more often than I see most family members. I’ve had more CT/MRI/Ultrasound scans than hot dinners, and I am still nowhere nearer to improving my quality of life. Now, I do have some options, such as more surgery, but this isn’t a cure. It will simply grow back. So I don’t actually consider that an option – at least until I end up back on the floor in A&E.
There is no known cause for endometriosis, and without knowing the cause there can be no cure. As I said, 1 in 10 women have endometriosis in the UK, and that’s just the ladies that have been diagnosed, and diagnosis is the hardest part. It can only be diagnosed officially by keyhole/open surgery, which is a lot, and it takes a lot to get to that point when doctors have no idea what’s wrong with you.
Its very much a viscous cycle. As much as I was glad I could finally give a reason as to why I was feeling so bad, I was so deflated to find out it was something that couldn’t really be treated permanently.
The reason for me sharing my story is that, I went through many years of grueling pain and misdiagnosis and I want more ladies to challenge their doctors when you get told its only IBS or period pains. I cant emphasis enough that you have to push them into this diagnosis, or spend your life wondering why your body is attacking itself.
To give you an idea, my symptoms are as follows:
- Intense stabbing stomach and back pain
- Fatigue
- Headaches
- Bloating
- Nausea
- Painful periods (which is managed by the Mini-Pill)
- Weight gain
- Possible infertility (I haven’t tried yet)
Other symptoms consist of:
- Pain during sex
- Pain when going to the toilet
- Diarrhoea
- Constipation
Now, if you’ve said yes to 3 or more of these and are also having issues with your periods, get an appointment with your GP now and discuss endometriosis with them.
Endometriosis UK (www.endometriosis-uk.org) is the leading charity providing support, help & guidance to women and families whose lives are turned upside-down by this chronic disease. Get In touch with them too because they’re fantastic.
And last but not least, speak out. It’s not embarrassing, it’s not a dirty secret. It’s your body, and you have every right to scream it from the rooftops if you know something isn’t right.
Written by Aimee from The E Word – Follow her blog now!
