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Endometriosis: my story

I always knew that my periods weren't quite right. When I started my period at around 15 I had known they'd be painful - lots of my friends wore their period pain like a badge of honour - cementing their transition into womanhood alongside listening to Kate Bush and shaving their bikini line (shaving - why did we do that - that's a whole different discussion!). But nothing had quite prepared me for the unbearable pain, intense sickness and heavy bleeding that visited me each month.

Nobody could hear me

I vividly remembering telling a school friend how horrendous my period pain was and her teasing me for a low pain threshold. One particular sunny day, the worst happened and I bled through my school trousers, a dark smudge of red on my plastic chair. My gym teacher would give me a disapproving look when I passed over the note from my mum explaining I'd be missing P.E because of my period.

Sometimes, and even now, the only way I could take the edge off the pain was to sit in a hot bath for three hours. My doctor suggested Ibuprofen and a hot water bottle; "maybe some gentle exercise will help?" he had said before turning back to his computer in a not-so-subtle sign that the conversation was over.

One particular day stands out in my mind. I was in my early 20s and at my friends house. I called my mum when she was at work because I'd fainted from the pain. My body shaking and breaking out into a cold sweat and my mum left her work to come and collect me - I crawled to the car naked underneath a dressing gown, the only thing I could manage to put on.

These nightmare periods followed me everywhere and were never considerate of the importance of a day. I could be interviewing candidates for a job, curling up on my office floor with a hot water bottle and answering emails in the foetal position hoping my manager wouldn't walk in. Every time I told someone how bad the pain was I was met with the same responses "it's just period pain, all women get them", "it can't be that bad", "your pain threshold must be so low" - nobody could hear me. Or perhaps they just weren't listening.

"Doctor, Doctor, there's an unbearable amount of pain in my uterus..."

But it didn't matter how many doctors I saw, nothing changed. Until one day, it did. I went to another doctor (perhaps my 5th) and as soon as I started reeling off my symptoms she said "it could be endometriosis" - something I had never heard of before. We did tests, I had an internal examination, she found cells. I had a scan; they booked me another appointment. I had a Laparoscopy (a surgical procedure to examine the organs inside the abdomen) and a colonoscopy (a test to check inside your bowels) under a general anaesthetic. I signed a form agreeing to a hysterectomy if anything untoward happened. I was wheeled into surgery finally feeling like I was being listened to, being taken seriously.

I'll take three doses of that anaesthetist please?

The day of my surgery is a blur. Excitement, fear and heavy dose of anaesthesia are to blame for that. I remember snippets of things; waking up with a smile on my face and telling the lovely nurse who was wheeling me into the recovery room that my anaesthetist was "a total hotty". I remember feeling ravenous and requesting a cup of tea and a sandwich to the nurse who returned armed with a smile, a plastic cup and a Cheese and Pickle whilst other patients around me were hurling into buckets.

I remember after the sandwich and tea (which honestly could have only lasted 2.5 seconds before being demolished), no one checking in on me and watching the clock as my bladder begged to be emptied. I'd never been in hospital before so I was unaware of any protocol. All I knew was that I was still ever-so-slightly high and also desperate to pee. I slowly peeled back the blankets that had been expertly tucked in and gently shifted my legs - no pain! That's good! As I got down from my bed and looked at where I had been, a deep red bloom of blood painted the white sheets where I had been laying down. I remember not really caring. I remember shuffling down the hallway to the toilet, seemingly forgetting my arse was on full display. I remember the pee. I remember standing and feeling a sudden rush of wooziness that made me realise perhaps my little toilet-adventure wasn't the best idea I've had. I headed back and climbed back in. Back on to the blood that now felt cold and sticky against my back. A nurse came over 20 minutes later, "let's get you to the loo" she clucked, "I've already been" I replied, "who took you?" - "I did!" A tut and a shake of her head. I remember thinking I hoped I would still get dessert.

I remember the doctor and his assistant sweeping a curtain around my bed and a sinking in my stomach that something had gone seriously wrong. Nothing had, thank god, but the surgery had been tricky and much longer than they expected, there was more damage than they first thought. From what I remember they said I had a damaged ovary, a womb that thickened the wrong way around, endometriosis all over the place and some nasty ovarian cysts. They informed me my chances of getting pregnant naturally or carrying to full-term were low, but not impossible. They said to think about options. They didn't tell me what options they were. Or maybe they did. There were a lot of words I didn't understand.

I vividly remember my mums uncharacteristically anxious face. She informed me that was because no one had told her what was going on when I hadn't come out of theatre at the time they had said I would. That they kept her waiting free from any information.

I remember it being evening and finally being told I could go home, a receptionist giving me a Jelly Baby that caused me to faint and being lifted back on to the bed. Eventually, Mum took me home and I slept on the sofa in the front room because stairs were a mountain I had no intention of trying to climb.

"Stop making me laugh; it's f*cking killing me!"

The following morning after surgery, desperate for the loo and the pain killers having worn off a little, I summoned my younger sister (who was 12 at the time) and my mum. "I need help going to the toilet" I announced. They each took an arm and we headed to the toilet. I couldn't bend or move much and I'm lucky we're a close-knit gaggle of females because what could have been incredibly awkward became one of my favourite memories of all time! In our cramped little bathroom, my mum holding me under my arms with my nightie up around my chest and my sister trying to pull down my knickers so I could pee, the three of us were in fits of giggles so badly I was crying with the pain from my surgery; which only made the three of use laugh even harder and my brother knocking on the door asking if everything was OK, concern laced in his voice; which was probably the moment we lost control completely - I'm just glad I had managed to make it to the toilet seat first!

Happy 23rd Birthday, you are now menopausal

My recovery was swift. Barring an ill-advised hasty return to work resulting in my dad having to pick me up and take me back home, plus some cock up with my injection taking me from the doctors to the hospital in a car when I could barely move, my body responded well and healed quickly.

I was give GnRH analogue injections as treatment. A medically induced menopause aimed to give my body time to recover and heal. Which would have been fine except it's A MEDICALLY INDUCED MENOPAUSE. At 23!

It's like PMT on steroids except without the pain and instead replaced with hot flushes and boobs that feel like they might explode (something that I had never had before but since my treatment I can now expect every month). My mood swings were ridiculous and I felt like I was constantly riding a tidal wave of anger and depression. I sweated to the point of fainting, even in the winter. I lost a lot of weight, the only thing I could stomach some weeks were chips and everything else made me nauseous. Instead of a 4/5 days a month of interruption I felt like now every day was a battle with my body. I called my doctor after one particularly bad day at work and told them I was stopping the injections.

10 years on

Some months my periods are significantly lighter but mostly I still suffer with heavy periods (I change my pads probably every hour - every 3 hours at night during my heaviest flow.) After my diagnosis I had regular smear tests for signs of abnormal cells for a few years and then the doctor said I could just come in if I noticed a significant change in my period. I am not on any chemical contraception, mostly because my body has enough to deal with without being messed up even more. I've learnt to manage my period a lot better which I think only comes with having lived with it for years. I track my cycle using a BBT and record what I eat and drink, discovering patterns with food that can inflame my pelvic area more and therefore make my periods unbearable. I'm ready to be a mother but I've had enough time to consider that this might take time or may not even be possible; so I'm not feeling any undue pressure.

When I hear about other women's experiences with endometriosis (and there have been a lot!) I wonder how it's still a word that people don't know. I wonder how it still takes 7.5 years for a diagnosis. I don't know if it's taught in schools; but it should be. Mostly I'd like people to understand that everyone person's journey with menstruation is different and to be more considerate of those who share with you their own pain.


Useful links about endometriosis:

Endometriosis UK - provide vital support services, reliable information and a community for those affected by endometriosis.


Emma Downey | Founder

Emma can be found glued to her laptop/kindle or embarking on her next favourite hobby. Avid cake-eater, Disney-superfan and passionate about female empowerment, Emma founded WWD in 2017. She's currently travelling around Europe in her converted camper van and eating far too many croissants.

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