Can you imagine having nine surgeries before you've even reached the age of 32? For Emma Williams-Tully, it's her reality. The mother-of-one has been suffering with symptoms of Endometriosis since she was 10-years-old, but her condition wasn't diagnosed until she was 21. Since then, she's had to have a hysterectomy, taking away her ability to have the big family she always dreamed of. Here, to mark Endimitriosis Month, she documents her journey so far and what she's doing to raise awareness of the condition.
"Endometriosis. Funny how the first three syllables (if you say them slowly enough, all in a 'down with the kids' way) sound like you're saying 'end of me', because there are times when you feel that this chronic illness will literally get the better of you and, in fact, be the end of you.
Whenever people ask me how I'd describe the pain, I always describe a scene from Alien. Try and think of something that is unearthly, that is pretty nasty as hell, trying to rip itself out of your insides. That's how I'd imagine it, if I wasn't too chicken sh*t to watch the film that is!
The thing is though, living with Endo is like Groundhog Day, except there is no romantic interlude at the end of the story. You go to bed at the end of each day and wake up every morning with the same debilitating pain. Day in, day out.
10 things your gynaecologist is really thinking but doesn't tell you
My journey started when I was 10 years old. I literally woke up in what can only be described as a pool of blood and agonizing pain. It was like a scene from a horror film. Periods would last for 14 days straight with the most crippling pain and be ridiculously heavy, all just to come on again 14 days later. Like a huge majority of girls out there, I was told that this was how periods could be.
When I was finally referred to a gynaecologist, the first thing they did was send me for an ultrasound scan where they found nothing. Not a thing. Nada. My womb looked like a temple of a Goddess. This went on for many years where they tried many different types of medications, Prostap being one of them, a monthly injection that puts your body into a false menopause. Being on Prostap, though as incredibly difficult as it was emotionally, it helped physically. This led the doctors to believe that I might, in fact, have Endo due to the fact that because my body was no longer producing oestrogen, the endometriosis was no longer thriving off of this.
It was at this point that at the age of 20 that I had my first laparoscopy. Devastatingly though, they found nothing. I know, you might wonder why I found it devastating, but when you are at your wit’s end, having someone say, “You were right all along” truly matters. So they believed I had something called adenomyosis and referred me to an endometriosis surgeon.
It was a matter of six months and I already was meeting my new surgeon. At this point I was so used to the whole 'ankles together, knees apart' position that he didn't even have to ask. Within 15 minutes of talking he had already booked me in for my next surgery to be performed. It is there that they had finally found endometriosis... and it was EVERYWHERE. My uterus, bowel (hence why I bled heavily from the bowel every day), ovaries, bladder (hence why whenever I took a wee it would stop and go like a water gun), my back, hip, fallopian tubes... This thing had a mind of its own. There's me wanting this diagnosis, then having it there in black and white. I just looked at my boyfriend (now husband - can you believe it - he stuck around) and cried.
There started the journey of Prostap, surgery, Prostap, surgery. In the midst of this, we were blessed with (and I quote from my surgeon) “an absolute miracle of a child”, our beautiful daughter. Every, single second of every single day I look at her and think how incredibly lucky we are to have her. Even when she is having a tantrum (she's 3, save us all).
Things though, started to get really bad. Even when I was on the Prostap injections, I would be in horrific pain and bleed. The Endo would just keep growing; all of this was not a good sign. For years my surgeon had talked about me having a hysterectomy, but I was so determined to give me and my husband a family that I refused to let my body take that away from us. I couldn't fight anymore though. My body had won. At 31 years old I had signed the forms. I was having a hysterectomy. I had lost the battle.
I cleared my gut and cured my infertility
A matter of a few months later I had two surgeries to perform the hysterectomy. One lasted six hours to remove my ovaries and fallopian tubes where part of the bowel was damaged. I ended up staying in the hospital for a week, with drains coming out of my bowel. The second operation was seven-and-a-half hours where I needed a blood transfusion as I had lost so much blood, but they were finally able to remove the uterus that was stuck so severely to my bowel; however, unfortunately, my left urethra was damaged, so I had a 30cm stent in for eight weeks (that was a great joy when I went for a whizz, let me tell you...)
And so it was done. I was no longer able to have any more children. I can't even say I felt broken because that would entail having to feel some sort of emotion. I felt numb. I always dreamt of having four children. Yes, I am crazy, why four I don't know, but it was always four. I dreamt of them all running around and jumping into our bed in the morning for cuddles, big Sunday roasts and then we'd all eat so much food that'd we would be the ones who would end up looking like pigs in blankets.
I remember there was one particular moment where I was sitting on the sofa, I was still recovering from my surgery and I could hear my husband and daughter playing upstairs. A tear quietly started rolling down my cheek and I was thinking to myself, “I'm drowning”. It was at that moment I thought, I can either sink, or I can swim. That's when I really started getting passionate about spreading awareness of Endometriosis. That no other girl or woman should ever to go through what I have had to, or still have to go through every single day.
It takes on average seven-and-a-half years for a diagnosis; this has to stop. Now. I'm determined that it will. So, I decided to put together a calendar for Endometriosis UK, and it has been, without a doubt, the most rewarding thing I've ever done.
When I put out a message on social media about wanting models with endometriosis, I never in a million years thought I would get the response that I did. It just proves how much it affects so many lives. The girls that I have met are strong, passionate, kick-ass ladies and I love them all dearly. Having Endo is no sob story, we're too strong for that. Hell, would someone who's going for her ninth surgery for Endo alone sound like someone who's weak to you? We are absolute warriors and we will never give up until our voices are heard."
You can purchase Emma's calendar here. All proceeds go to Endometriosis UK. Don't forget to follow her on Instagram to keep up with her journey.