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Emma's story: "Endometriosis affects my life on a daily basis"

For Emma, a diagnosis of endometriosis came too late. Robbed of her fertility and life-long damage to her organs, she is now an advocate for women’s health working with organisations and workplaces to help raise awareness of this debilitating disease.

Photo of a young white woman in black and white in front of many words describing periods such as painful, flooding

Here, Emma shares her story as part of our “Just a Period” campaign.

I laid quietly on the thread-bare carpet under my office desk, occasionally vomiting into the bin. I wouldn’t dare ask to leave work early at fear of being given a formal warning. I’d already been scolded for lateness despite explaining I was experiencing abdominal pain. Male bosses had stared blankly at me, unable to comprehend that pain could prevent someone from doing simple tasks.

Later that evening, I was admitted to hospital. A scan showed a 20cm ovarian cyst and multiple endometriomas, also known as chocolate cysts, which had erupted. I was put on a wait list for surgery, and three months later, a four-hour complexed surgery diagnosed severe stage 4 endometriosis, with progression in my bowel and colon, and adenomyosis.

It was the first time I’d heard the word “endometriosis”. I finally had validation for my pain and in that moment, I genuinely thought I was cured. I also learnt my fertility was severely compromised and I should have IVF immediately. I was 27 and having children before 30 was not part of my plan. Rather than being given a life-changing decision moments after surgery, I will forever wish I had been advised to freeze my eggs instead. It would have saved a lot of heartache, pain and money over the forthcoming years.

A young white women lying in a hospital bed, she is giving thumbs up

I was no stranger to pain. Being stopped in my tracks in a supermarket aisle, cancelling on plans or waking up in the night because of intense cramps was a regular occurrence. Vomiting from pain, or even blacking out, had become a normal part of my period. I had lived liked this for eight years, since the age of 19, when I experienced my first extremely painful period.

Vomiting from pain, or even blacking out, had become a normal part of my period. I had lived liked this for eight years, since the age of 19, when I experienced my first extremely painful period."

During those years I begged and pleaded with GPs to give me more than painkillers. I knew something wasn’t right, but my pain was dismissed as “just a bad period”. I eventually found a female GP who took my pain seriously and referred me to a gynaecologist, however the emergency hospital admission came sooner.

My quality of life improved after surgery, and I was able to control periods with the combined pill. But over time, I started to notice increased swelling, pain and problems with my bowel. I self-managed symptoms with a healthy lifestyle supported with a side of painkillers when required.

At age 30, my husband and I began the IVF process. Due to the IVF postcode lottery, we were viable for one NHS funded cycle. Unfortunately, during this time, I was admitted to hospital once again with acute pain and required surgery for another large ovarian cyst. Following the surgery, I no longer met the requirements for NHS funding, and to our devastation it was revoked. Yes, really! I am not one to sit quietly and let things go so, armed with legal advice, I took on the hospital and fought for my funding. I won and I was privately funded by the hospital for one cycle of IVF.

In July 2018 I took my first IVF injection, unfortunately my mother-in-law passed away on the same day. That first cycle is a blur of grief and stress, and unsurprisingly it failed. As did our second cycle.

Our third, fourth and fifth IVF was in Barcelona. During this time, I required a major six-hour surgery to remove my fallopian tubes. Due to endometriosis, my fallopian tubes were filled with toxic fluid, which was preventing an embryo from implanting, it also put me at risk of sepsis. It was a huge decision to make. Although we needed IVF, the procedure would determine my infertility. I proceeded with the surgery, and following our fifth cycle, I had an early miscarriage. Rather than feel sad, I took it as sign of hope. A positive indication that our IVF could be successful.

On our sixth IVF in London, I became pregnant. We were delighted but cautious. Unfortunately, multiple cycles of IVF take away the happiness of pregnancy and replace it with underlying fear. The pandemic hit, and I was right to have my doubts. At 20 weeks a private scan showed the baby was suffering with severe PUV, a bladder outlet obstruction, which meant he’d be unable to survive outside the womb. During the peak of the pandemic, I underwent a surgical termination for medical reasons (TFMR), alone. My husband waited in the car park due to restrictions.

I quit on IVF after our ninth cycle. IVF is stressful and the hormones take a huge toll on your body. With every injection, egg collection, transfer and pregnancy, I could feel my endometriosis getting worse. The pain would be uncontrollable. During a period, I would take to my bed for three to five days, unable to move, surviving on prescription opioids. Symptoms of bowel, colon and rectum endometriosis were now prominent; blood in my stools and urgency of needing the toilet which prevented me from leaving the house. I’ve sat on the toilet with my laptop working because during bad bowel endo flare ups, it’s just easier. It sounds crazy, but this is the reality of my life with endo.

Six weeks after my TFMR, I was admitted to hospital with life-threatening sepsis. So used to pain and vomiting during my period, I had ignored the warning signs of infection and put my life at risk. It was a wake-up call. A harsh lesson on the brutality of endometriosis.

Remember to always take your pain seriously, it’s not just a bad period.

I could feel my endometriosis getting worse. The pain would be uncontrollable. During a period, I would take to my bed for three to five days, unable to move, surviving on prescription opioids."

My reproductive organs, bowel, colon, rectum and bladder are all compromised because of this debilitating disease. I have learnt to manage symptoms through diet, lifestyle and medication. I am aware of my body and its needs. I rest when I need too, and I push myself when I can. My rule for living a happy, healthy life with endometriosis is acceptance and adaption. Yes, there will be days where I am bed bound, but it’s not forever, and it makes the days I am pain free and thriving extra special. I don’t let endometriosis stop me from living a full life, in fact, it pushes me to do more. One day, I will need a life-changing surgery, but until that day comes, I will travel the world, appreciate every second and help other women do the same.

I have taken my pain and turned it into passion and power to ensure no woman ever feels dismissed, unvalidated or fearful in speaking out about her health."

Today, I own a company called The Informal, which provides speakers that focus on realism to support businesses in their wellbeing and workplace procedures. Our stories of women’s health demonstrate resilience and understanding, which are educational for both men and women.

A women standing on a beach with a black dog next to her

Learn more about Emma’s story on Instagram @emma_kemsley

Our “Just a Period” hub is here to help educate and empower women and girls. Get more information and support here.

If you have any symptoms or concerns, always speak to your doctor. 

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