Member Stories for Endometriosis Action Month

March 21, 2024 | In the News, WiR Features

March is Endometriosis Action Month – find out more below and how you can support friends and colleagues. Read our Member story for an honest insight into living and working with Endometriosis. A big thank you to our members for sharing their experiences with us. The resources at the end show you how you can take action in your workplace to help others.

What is Endometriosis?

Endometriosis impacts 1 in 10 women and those assigned female at birth in the UK, yet so many are still unaware of the condition and its impact.⁠

Getting a diagnosis for endometriosis now takes almost a year longer than before the pandemic, according to new research published in our new diagnosis report for 2024.

For Endometriosis Action Month this year, charity Endometriosis UK is focusing on raising vital awareness of the common symptoms. Improving general public awareness and understanding of the condition ensures that those experiencing symptoms, their friends and family and their healthcare team know to ask ‘could it be endometriosis?’, leading to more prompt diagnosis and access to care.⁠

Read: “Dismissed, ignored and belittled” The long road to endometriosis diagnosis in the UK

Join us and help us demand change for the 1 in 10 women and those assigned female at birth with endometriosis in the UK.

Find out more via Endometriosis Action Month here

Member Story

I fear the diagnostic process for endometriosis.

It’s not a dramatic fear, full of shouting or crying. It’s suddenly finding myself holding the milk carton and having to re-boil the kettle, because I’m not sure how long I was staring into space.

I fear that the nurse I see will make me feel like I’m wasting their time. I know that for them it’s no big deal, they see hundreds of people like me each day complaining about pain. I know I am not an emergency.

As a child I started fainting from heavy periods. They would come out of nowhere and ruin my uniform. I had a covert deal with a dinner lady that she’d throw me a chocolate bar on my way between classes if I looked pale. I was put onto the contraceptive pill.

I went to university and things got worse. I bled every day for over a year while taking daily contraception. I remember being told by a university doctor, as I sat exhausted and depleted in front of him, “Women get periods. It happens”. I was so embarrassed.

Once I started work the pain became the main issue. Sitting at a desk for 8 hours every day was hard and I’d have to move to the floor of the office loos and close my eyes during breaks. I had my first cervical cautery.

I started working from home two days per week. I went to see a GP again and was put on hormone injections. Things went downhill quickly. I couldn’t eat without severe discomfort. I lost weight and ended up 42kg (6 stone 6lbs). I had another cervical cautery.

I saw a female GP. She took me off the injections and put in a coil. The bleeding became manageable and I started to put weight back on, but my abdominal symptoms got worse. I got pain and bloating outside of my monthly cycle that would bend me double and make me look heavily pregnant.

It seemed triggered by anything – stress, going to the toilet, having sex, eating meat.

In early 2023 I was unable to walk properly for 48hrs and was hospitalised with suspected appendicitis. I was released with no treatment after blood tests ruled it out. Two weeks later they decided it was a womb infection and put me on anti-biotics.

In October 2023 I vomited bright red blood and passed out in our bathroom. I was found, hospitalised again, diagnosed off symptoms with stomach ulcers, and sent home with omeprazole.

A month later in November 2023 I started bleeding in my stool, turning the toilet bowl bright red. I was mortified, but eventually admitted what was happening to my partner who took me to A&E. I was referred for a flexible sigmoidoscopy by a doctor at the ambulatory unit. They found no polyps in my lower bowel and I was sent home.

It has been 14 years of symptoms.

I presented this letter to my GP and she referred me to an endometriosis clinic on 9th February 2024. She suspects I have endometriosis in my womb, bowel, and possibly stomach.

The referral letter asks you to chase if you haven’t heard in two weeks. I waited for six. Today I rang them to find out when I might be able to be seen and was told there is a 9 month wait for an appointment, and when I asked what my next step could be I was told “we can’t help you” and they hung up.

You may know people like me without realising it. During the timeline outlined above I passed A-levels, got a law degree, gained four promotions to senior level, and got an MBA. I have a successful career, social life, am physically fit, 30 years old and engaged to be married. I have peace, love, and I am often very happy.

Only my fiancé knows the details of my health. The only work colleague ever to know something wasn’t right was my first ever manager, who let me work from home two days per week so I didn’t have to sit on the bathroom floor in breaks.

I am not here to waste anyone’s time. I know that women can lead successful lives while fighting this battle. I just don’t believe that they should have to.


To find out more visit Endometriosis UK

Are you an employer?

Find out more about the Endometriosis Friendly Employer Scheme

Read our second Member Story here