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"It can be physically and emotionally draining at times, but having a supportive network of friends and family who are willing to understand and raise awareness definitely helps."

In just one week on 19th May 2023, 6 brave challengers are taking on the 'One Million KG Challenge' fundraising for  Endometriosis UK in support of their loved ones with endometriosis. We caught up with Lucy, whose Dad organised the huge challenge. 

Tell us a little bit about yourself and your journey with endometriosis. 
Pain and fatigue began for me at around 16 years old. At the time, I was training full time as a dancer, so it was easy to put my symptoms down to that (even though none of my friends were experiencing the same). I would take every break possible to nap just so I had enough energy to get through the day, and my body was in a constant state of pain and fatigue. This subsequently led to me having to give up my career in dance without really understanding why this was happening to my body.

I continued to suffer even without the presence of periods, until the pain was so bad one time that I passed out and my friend had to ring an ambulance. It was then that I realised this was far from normal and something had to be done. It took several visits to my GP and specialists for my pain to be taken seriously and finally I was diagnosed via surgery in 2019. The pain subsided for a few months, but a second surgery was needed less than 2 years later.

I still struggle on almost a daily basis, and my lifestyle has had to adapt dramatically to manage my symptoms. I was unable to hold down a full-time career so now work as a freelancer which allows me to rest when necessary and have the time off I need during an endo flare up. I still have to be cautious when it comes to work and social commitments as my body gets fatigued easily which can lead to my symptoms worsening. It can be physically and emotionally draining at times, but having a supportive network of friends and family who are willing to understand and raise awareness definitely helps. 

Your Dad and the 1 Million KG team are taking on a huge challenge! Can you tell us about it? 
The 1 Million KG is a group of 6 fathers, husbands and brothers who are raising awareness for those in their lives who are suffering from endometriosis. They are putting their fitness to the test by using free weights (weighted squats, deadlifts, barbell rows and bench press) to move 1,000,000KG within 24 hours. The weight is equivalent of lifting and moving 200 fully grown elephants!

What does it mean to you that your Dad has taken on this challenge?
I'm sure anyone suffering with endometriosis would agree that any support from friends and family is hugely important and appreciated. With endometriosis being an often invisible disease, it is so easy for people to not take it seriously so to have my Dad advocating not only the pain I have been through, but for all of those suffering, really means a lot. 

Any words you'd like to share with your Dad and the team ahead of the challenge?
I would love to say a massive thank you to my Dad and the rest of the team for putting themselves through this huge challenge. I have witnessed just some of their many gruelling training sessions in preparation for the 19th May so I feel incredibly proud and inspired by their determination to take on such a tough challenge for endometriosis. You've got this! Any support is massively appreciated by the team, myself and those who have or know anyone struggling with endometriosis.

A huge thank you to Lucy for sharing her story and to her Dad Matthew and the 1Million KG Challenge team for their incredible support. You can visit their challenge page here.

 

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Since starting my period at the age of 12, I was under the impression that some people just had worse periods than others and that I was one of the unlucky ones. I would constantly hear the phrase 'just power through.'

After having doctors appointments about the excruciating pain I was having, I was told to go on a contraceptive pill. When this didn't work for me, the next solution was to change to the next contraceptive pill and so on. This was the only option I was given for 10+ years. At this point, I had never heard of the word endometriosis so accepted that I would always just have to ‘power through’.

It wasn't until having an unbearably uncomfortable smear test that the doctor advised the level of pain I was feeling was not 'normal'. I was referred to have a scan to investigate the possible cause of my pain.This was a real turning point for me. During the scan at the hospital the doctor advised me that they suspected endometriosis and referred me for laparoscopy surgery, to investigate if this suspicion was correct. I finally felt like I was getting closer to having answers after hearing about endometriosis and the symptoms for the first time.

In December 2020, I had my laparoscopy where they found and removed endometriosis. I was relieved yet frustrated I hadn't been diagnosed earlier, I wish there had been more awareness at the time my symptoms began.

I really hope that in future the time taken from having symptoms to getting a diagnosis is a quicker process. Being diagnosed has helped me understand what my body has been going through and given me peace of mind that it’s not all in my head - I was right in thinking I shouldn't have been feeling like this and there was something wrong.

Being diagnosed has led me to endometriosis forums where I can talk openly about living with endometriosis to others who understand, and it's been extremely helpful having that support system.

I was diagnosed with endometriosis fifteen years ago after three years of symptoms.

I’ve since had several laparoscopic surgeries, varied hormone treatments, artificially induced medical menopause and the insertion of the mirena coil. 

I signed the NHS trust that I currently work for up as an Endometriosis Friendly Employer in 2022 to spread awareness and provide insight into the condition. I found through my own experience that although very common, it can still be relatively unheard of, so educating those medical and non-medical staff in my own workplace was my priority. I am also very aware of the challenges and often strain this can cause both inside and outside of the working environment.

I have been amazed at the number of staff who have contacted me since starting the scheme and those who have joined the safe and supportive group I have created for employees to meet and discuss their condition and experience of living with endometriosis. 

There are now a range of helpful documents available across my workplace, published by Endometriosis UK, in best managing and supporting employees with the condition and promoting supportive first discussions between employees and management. 

I am lucky to have always been supported throughout my condition by my own work management so understand the importance and ease of this for others too. 

I am extremely passionate about women’s health and my mission is to empower others to live a confident, mindful and healthy lifestyle both at home and in the work environment and hope the support and inspiration I provide through my own experience and the scheme can do just that. 

 

We want everyone with endometriosis to feel confident and supported at work, which is why we are so proud to have developed the Endometriosis Friendly Employer Scheme.

The Scheme is a way for employers to confirm their commitment to developing a work environment and culture that enables employees with endometriosis to thrive at work. Find out more here.

It’s 2019 and I’ve secured my dream job after redundancy and feel on top of the world, only to later discover that it wasn’t meant to be. Fast forward two years and I found myself in the position of poor health and unemployment.

Summer 2020 changed my life as I knew it, I was experiencing excruciating pelvic pain, and was getting no support from my GP. I tried all the medication they would throw at me, hoping somehow it would make a difference. I had always experienced painful periods but this was next level.

My poor health was impacting my job, having regularly long periods of time off work. This was disruptive to not only my employer but also to my financial state and mental well-being.

I was getting nowhere with my GP and so, in Spring 2022 I paid for a private consultation with an endometriosis specialist after a nurse mentioned the condition to me during one of my many visits for tests. I didn’t know what to expect but the specialist read my notes and agreed exploratory surgery was the best option.

Prior to surgery I found myself off work (Again!) and was in a bad way. I could hardly move I was in that much pain and was pleading with the GP for stronger painkillers. Between March and my surgery in May I tried everything I could, nothing took the pain away. I was bed-ridden most days and I had no quality of life.

My surgery day came and I was glad to get some answers. I received my diagnosis of endometriosis and finally felt like I had an explanation for the worst two years of my health to date. However, I found little relief post-surgery and was still off sick from work.

The financial stress is something you can’t comprehend until you are in the thick of it, you don’t plan to be sick. Yet, here I was running out of statutory sick pay and heading towards signing on for benefits. I was suddenly reliant on my partners income, and we struggled to make ends meet. I’m the type of person who likes their finances in order but having to call multiple companies to make payment plans, choosing between fueling your car for some freedom from your own front room or eating the food you want certainly changes your gratitude for the small things in life.

After 7 months off sick, I recognised the need to decide what’s best for me with health in mind. Sadly, I left the job of my dreams in pursuit of something more manageable for my over all well-being.

In January 2023, I started a new job in youth work. If it wasn’t for Endometriosis UK last year would have been more of a struggle than it already was. Through my local support group, I have met some incredibly wonderful, strong, determined people who made me realise that all is not lost. I owe a lot to the group and the group leader Vicky for their support over the past year. While I still navigate the stormy seas of this condition, I am much more optimistic about whatever happens next as I am not doing it alone.

I’m Hannah and I’m a singer, music producer and sound engineer living in London. I go by the artist name, Piripa.  And for years now, I’ve lived with endometriosis – I was officially diagnosed after having a laparoscopy in February 2023 after 8 years of searching for answers.

Sadly, like so many living with endometriosis, my journey towards diagnosis has been far from easy. I have suffered with symptoms from the age of 15. As the years went on, my symptoms progressed from painful periods to much more chronic, daily pain and chronic fatigue. After a good few years of going to the GP, in 2019, I saw some information online about endometriosis and suggested to my GP that I might have this. I continued to see GPs and specialists over the next few years, trying different kinds of medical treatments unfortunately with little improvement. Eventually, I was put onto a waiting list for a laparoscopy and received both diagnosis and treatment for endometriosis. 

Receiving my diagnosis gave me a sense of clarity that I was lacking before. Up until that point, the uncertainly of not having the diagnosis had been difficult. For a long time, I felt like my pain was not taken seriously and often felt that the medical professionals I saw lacked empathy and didn’t understand the severity of the impact this had on my life. Long NHS waiting times between appointments and scans often left me feeling alone and unsure of how to cope while I waited. Without the online community and the information I found through Endometriosis UK, I wouldn’t have been able to advocate for myself properly to get the treatment I needed. This is why now, I’m really keen to be a voice for those living with endometriosis, to continue to improve awareness and knowledge of the condition and continue to advocate for further research.

For me, endometriosis has changed my life. Living with chronic pain and fatigue has forced me to change my lifestyle and adapt to a way of living that works for my body. When I realised for the first time that I would probably live with this for the rest of my life, I really struggled with depression and felt a real sense of loss for the ‘able’ body that I previously had. I felt incredibly anxious that I wouldn’t be able to have the career I wanted and sometimes even wondered if I’d have to give up music and performing for good. But being a part of the endometriosis community has given me so much strength and motivates me to keep going. They’ve helped me accept my diagnosis, remind me that life still goes on with this disease and that there is hope for the future. They’ve given me the courage to keep returning to music in a way that works for me, and to write and create more music that tells my story and that recognises and celebrates my vulnerability and strength.