Heard of Endometriosis? No…? You’re one of the lucky ones. Shockingly 1 in 10 women in the UK suffer from the painful disorder making it the second most common gynaecological condition in Britain. Here we hear from Emma Williams-Tully on what Endometriosis is, what it’s like living with the condition and we learn about her brilliant campaign to raise awareness.
Imagine having 3 major surgeries in 17 months (and other more minor surgeries), which total 22 hours under the knife. These surgeries have resulted in your bowel being perforated twice, a blood transfusion, you being left with a catheter for three weeks (oh the joys of that) and a damaged ureter (twice) resulting in a 30cm stent that you can feel every second of the day for 6 to 8 weeks. All of this for a hysterectomy at the age of 31. For some people this sounds like a horror story, but for me this is my life. Why…? Because I have a chronic illness called Endometriosis.
Starting my periods at the age of 10 knocked me for six. Out of nowhere I began this cycle of fortnightly crippling, heavy periods that would lead me to having to take showers in the middle of the night only to come on again 2 weeks later. I remember often lying on the bathroom floor with my knees up to my chest as a teenager, the tears rolling down my cheeks sobbing as the doctors told me all of this was just a ‘normal’ period. This was not normal.
Eventually I was referred to a gynaecologist for some tests. The first thing they did was an ultrasound and they saw the most perfect looking womb you had ever seen. You would think I had carved it out myself it was so perfect looking. Seriously though, why was I in such crippling pain and yet they could see nothing? Things started to get even worse when I started bleeding heavily from my bowel and yet again when I had colonoscopies the bowel looked absolutely perfect from the inside. There are no words for how this makes you feel. Knowing there’s something seriously wrong with your body and nothing is showing up. It is quite honestly petrifying and makes you feel so alone.
At this point they tried different types of medications, Prostap being one of them. This is something that puts your body into a false menopause. Being 20 and menopausal was quite honestly devastating. I felt as if everyone around me knew. You become so paranoid that people can just ‘see’ it and will know. The worst is how it affects you emotionally. For the first two weeks especially I really struggled to fight the urge to not feel depressed by it. There were times I would sit in the bedroom and just cry, but not even know why. For someone who is always so strong, this is what killed me the most. The medication helped with the pain though and this is when the doctors started to question whether I had Endometriosis.
The problem with Endometriosis is that it doesn’t show up on ultrasound scans – it can only be diagnosed by laparoscopic surgery (keyhole). Going in for my surgery I was so nervous but also so relieved at the thought of finally having a diagnosis. Waking up and being told they found nothing, I felt numb. But this can’t be right?!
At the time they believed I had something called adenomyosis, where basically it is as if Endometriosis is in the lining of the womb. Right… but you can’t burn that away like you can with Endometriosis. So they referred me to a surgeon in another hospital for further investigation. It was a matter of 6 months and I was already signed up for my next surgery. The heaviness and pain being just as bad as ever, I still believed that they would find nothing, having gone through so many years of failed diagnosis I had lost all hope. But this time it was different and they discovered it. It was everywhere. My uterus, my ovaries were being suffocated, my fallopian tubes were twisted, my bowel was being suffocated, my back and hip were being pulled together and sorry for the TMI, but my rectum and vagina wall were being pulled together. For someone who wanted a diagnosis, my heart just broke.
From this point on it was a cycle of surgery, prostap (to suppress the oestrogen from growing Endometriosis), surgery, prostap. In the middle of all of this, me and my husband had our miracle of a child, our beautiful daughter who we are truly blessed for as we felt that this was ever going to happen. For me, even with the constant migraines, sickness that was so bad it tore my oesophagus and symphysis pubic dysfunction (SPD) that led me to be on crutches from 5 months – being pregnant was the most precious and wonderful feeling in the world and I will always cherish it forever.
It was after my 6th surgery that things started to get really bad though. Even whilst on the prostap injections, the pain was severe and I started to have bleeds at random times. My body was winning the fight and I was losing. All the years my surgeon had spoken about a hysterectomy I dismissed it as I was so desperate to have the family that we so desperately wanted. But I had to admit defeat. Endometriosis had won the battle.
And that brings me today. I’m now 32, 2 weeks after my 9th surgery for Endometriosis. The physical and emotional pain only spurs me on more and gives me strength to keep on fighting to spread awareness.
A few months ago I put out a message on social media explaining that I wanted to put together a calendar to raise funds for Endometriosis UK. I was so nervous that no one would reply and that it would end up just me on my own striking different poses. But how wrong I was and the response was INSANE. The ladies that came forward were the most passionate, strong, inspirational women I have ever met. Every single one of them have a story that shows what courage it takes to live with a chronic illness like Endometriosis.
The calendar is now on sale and I couldn’t be prouder. Whilst putting it together I have been so ill with my Endometriosis, admitted into hospital twice and have had a 7 hour surgery that caused severe damage. I have never done anything like this before and my God, it’s a LOT of work with emails and phone calls, especially for one person, but it has been so worth it for the thought of helping someone. Can you believe that 1 in 10 women have Endometriosis and yet there are still so many people that come up to me and say that they have not heard of it, even though it’s the second most common gynaecological condition in the UK.
My goal is to make people educate people on the condition and keep spreading awareness in whatever way I can. The time it takes for diagnosis, on average 7.5 years, which has to change and NOW. I will make it my mission to help this happen and won’t stop until I do. Fellow Endometriosis sufferers, you are not alone… let’s stand together to make a difference and make it happen now.
To find out more and buy the calendar go to the dedicated Endometriosis site here.
Words by Emma Williams-Tully
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