PERIOD PIONEER: Q&A with Endometriosis Sufferer and Creator of the Endo Wall
Meet Endo warrior and TOTM Period Pioneer Jaimee Rae McCormack. Here Jaimee talks about her Endometriosis diagnosis and her inspirational awareness project, the Endo Wall.
Did you know it currently takes an average of 7.5 years to diagnose Endometriosis? Endo symptoms, including severe cramps and heavy periods, can hugely impact everyday life. This statistic shows that many people are suffering for too long without a diagnosis, let alone medical aid and support.
This was the case for Cardiff-based artist Jaimee Rae McCormack. But it’s not only a lengthy diagnosis that has affected Jaimee’s life. After being told it was ‘all in her head’ and following a string of hospital trips, a fed-up and frustrated Jaimee had enough. Armed with a spray paint can, she sprayed the words ‘Endometriosis exists’ on the wall at the side of her house.
The start of the EndoWall
This was how the EndoWall started. An awareness project that has hit headlines in the UK and has generated support from Endo warriors all over the world. Here we had a chat with Jaimee to find out more about the EndoWall:
Tell us a bit about your story. What symptoms were you suffering from, which led you to seek medical help?
“I’ve suffered from a number of symptoms over the years. Ranging from chronic period cramps to sickness and diarrhoea. IBS to Chronic Duodenal Ulcers. Skin conditions to insomnia and constant fatigue. Pain during Sex, to difficulty breathing and collapsing on a regular basis. Honestly, the list goes on…. As I’m sure many other women out there can sympathise with.
To go right back, I started my periods at the age of 12 and they were pretty rubbish from the get-go, but gradually they got worse and worse. I tested out various pills suggested by the GP, but none seemed to offer any pain relief. They also didn’t help to regulate my monthly cycle. At the age of 15, I followed Doctors advice and went ahead having the Mirena coil fitted. It took a few months to settle but after a while, it gave me tremendous relief with my periods, but my bowels were still a constant bother. Having to urgently run to the toilet had become the ‘norm’ for me”
Did you see a change in your symptoms as you got older?
“At 18, it got worse. When I got my period, it felt like the Avengers were attacked my insides! Then for the first time EVER, I started getting psoriasis. My skin was itchy beyond belief! I’d even wake myself by scratching in the night. I felt at this point that there had to be something going on for my body to be reacting like this. So first off, I decided to have the Mirena coil taken out in case that was contributing.
Nothing was working, and the bleeding was so heavy. It would last for weeks at a time too! I continued to persist with doctors but often left appointments feeling like a hypochondriac causing a fuss over invisible pain. My period and bowel issues were taking over my life. It felt like I was getting stabbed with hot knives throughout my abdomen, chest, pelvis, thighs and back. When I went for tests, all results came back clear.
Around this time, I had moved to Sweden to live and work as an Au Pair. One night I was rushed to hospital after 12 hours of constant vomiting and intermittent diarrhoea. I had attempted to comfort myself by lying under hot running water after giving up on the usual hot water bottles and beanbags. I felt as if my body was shutting down. My body locked up, I couldn’t speak or breathe properly, and the pain was beyond anything I can describe.
Following this ‘episode’ I was told it was food poisoning. I just didn’t feel like I had recovered though. I felt exhausted and achy. When I flew home to consult my usual GP for advice, I was told I was HOME SICK.”
Did you seek further medical help after this ‘episode’?
“In October 2012, I moved home again, back to Cardiff. I continued to go to Doctors and Specialists but still no solid answers. I saw a Gastroenterologist and had an endoscopy and colonoscopy. They found Chronic Duodenal Ulcers, and it was lucky we found them when we did. I thought this was the end of my problems…
But in 2013 when I’d moved to Bristol, I found myself back in the hospital, suffering from the same symptoms as the previous ‘episode’ I had before. This was again treated as food poisoning. I was moved to a gastro ward and stayed there for a month. I lost a considerable amount of weight and became physically and mentally weak. I didn’t know what else to do and I felt that I wasn’t getting any more answers from the medical professionals, so I began seeking alternative therapies.”
When did you first hear that you might have Endometriosis?
“It was around March 2014. With the help of my family, we started to seek out alternative therapies and decided to explore acupuncture. When meeting with the acupuncturist she listened to my symptoms and suggested it might be Endometriosis. She suggested I research it and suggest it to my Doctors.
I started asking about Endometriosis but sadly in my experience, giving your own suggestions to the doctors, doesn’t always go down too well. It took me almost 2 years before I managed to have a laparoscopy and finally receive a diagnosis of Endometriosis! I cannot express the relief when I came around. Years of searching and I finally had an answer.
Did you have any additional treatment?
“Following this diagnosis, I have had two more laparoscopies to remove Endometriosis. I can say that the excruciating pain that I struggled with in my pelvic area has improved immensely. As has my bowel movement and water control now that Endo has been removed from my bowels, rectum, urethra, liver, appendix, colon, ovaries, fallopian tubes and uterus. I do still however suffer with chronic pain in my abdomen, ribs, chest and back but I am on a waiting list to have a PET scan to see if they can see anything.
I had my 3rd laparoscopy on the 29th August 2017 and by September I was back in the hospital. It took several ambulance trips and admissions to A&E for it to be assessed. Even after 3 operations proving I had Endometriosis, the Doctors still didn’t make the link. I ended up on the Gastro ward again, the same symptoms but this time with a diagnosis of Endometriosis. I stayed for just under a month. This is when I got told ‘If you think that it is going to happen again next month Jaimee, then it will!’ I could have screamed! I was sent home on a new concoction of medication with the Diagnosis FBD (Functioning Bowel Disorder) this time. I had also been given the ‘OK’ from the Psychiatric ward.
Since this trip to the hospital in September 2017, I have been doing my utmost to make as many lifestyle changes as possible. This is to help manage the condition and I’ve based it on my own research. I realise how much more I really can be doing for myself!”
In your opinion, what do you think can be done to improve diagnosis?
“Well as you can see from reading my story, it certainly hasn’t been easy or straightforward. Far from it! It has been the biggest challenge of my life so far. We desperately need more recognition for Endometriosis. Our options are so limited and sadly misdiagnosis can send people off on the wrong trail.
Essentially, I think we need an Endometriosis Specialist Clinic that has doctors/nurses from all areas. I know from first and second-hand experience, that women are being passed from person to person, department to department. This is wasting our lives! I still don’t know if all the things that I suffer with are linked or not. Hopefully with more research and more awareness future generations will not have to suffer in silence.”
So, let’s chat about the EndoWall. What motivated you to grab some spray cans and start the wall?
“Ever since I moved to this house in 2013 I’ve always wanted to do something creative to the side of the house, but never really knew what to do or where to start!
As my condition continued to control my life, I decided that I wanted to use March (Endo awareness month) to start shouting out about the illness. I wanted to inform people. There had to be something that I could do to get people’s attention! And that’s when the blank wall finally founds its purpose. I put my frustration alongside art and hey presto, The EndoWall was born.
I started spraying on the 10th March 2017 (Endometriosis awareness day). Top to toe in yellow, I went out on the street and began writing… ENDOMETRIOSIS EXISTS.
I have to say that it is thanks to my fab family that this ‘nutty artist’ was able to work on this house. But I also must send my gratitude to the years of artistic inspiration that has surrounded me. From the likes of Dali, Gaudi, Miro, Klimt and of course the mystery man Banksy. Without these influences I don’t think that I would have ever had the courage to tackle talking about an illness through the power of art. “
Tell us about the EndoWall in the early days, what were your main challenges? What motivated you?
“I cannot express how nervous I was the day that I started the EndoWall. I worried people didn’t like what I was going to do. But I pushed myself to go outside and get going with it. A good friend and photographer, Robin French, agreed to take photographs of me spray painting so that I could use the images to begin raising awareness. Within minutes of being outside a young lad started shouting at me, telling me how disrespectful I was to be spray painting – I was shocked.
I tried to explain what it was I was attempting to achieve but he wasn’t interested. I found myself slumping to the floor fighting back tears thinking “What am I doing?”. Robin captured this moment in a photograph (shown in collage below). I did think about stopping but then I found strength to use this as ‘fuel.’
The day after I made a start on the wall I was desperate to get back outside and continue. But before I knew it I could see blue flashing lights…There I was armed with 2 full of spray cans and it didn’t look good. The police officers were surprised when I said it was my house and that I lived there. One of the officers knew what Endometriosis was, that was utter music to my ears! I was shaking after they left.
After this I decided to always wear something yellow when I was working on the wall. I began adding flowers with 10 petals around the information I had already sprayed. 1 out of the 10 petals is outlined in black dripping spray paint, as if she is crying. This is to represent the 1 in 10 women suffering with Endometriosis.
What has the response been like for the EndoWall?
“As the EndoWall has gradually grown, the following has too. Starting off a little rocky but as the flowers began to creep up the wall the response has changed. It has become so positive. I have been truly overwhelmed by the stories, so many people have shared with me. There are many suffering all over the world, and it breaks my heart, but also pushes me to keep working.
I’ve also been touched by the partners, family members and friends that have got in touch on behalf of their loved ones. Endometriosis affects everyone in the sufferer’s inner circle. It’s a viscous knock on affect. This is the reason why, when launching this into an awareness project, I want to host ‘Endomeets’ and Fundraising events. I want to bring people together to share stories and offer support.
Did you ever imagine it would get this reaction and become such a talking point?
“When I started this EndoWall I honestly had no idea what I was going to do and what it would become. I couldn’t be happier with the way it’s moving forward. It was just my name on one black painted brick, that led to me building 9 more bricks and adding another 9 names. Over the past 3 – 4 months emails have flooded in every day. So now we have 36 Black painted bricks and over 300 names!
I am making changes to help myself this year and I’m in the process of moving to a new house. Thankfully the people buying my house would like to keep the EndoWall for a few years whilst I create more. I will be building up the black painted bricks so that more name can be added I move to my new house. I hope to find more people willing to give written permission to work on their properties soon. I have been speaking to women all over the world, so I am scouting out where to begin a tour – more info coming soon.”
What can we expect to see in the future?
“My aim now is to create as many EndoWall’s across the globe, so that they are there for the women suffering to sign. It’s for them to see first-hand that they do not suffer alone. I want to let these women know that I believe the suffering they live through daily. I want to help brighten up the streets. At the same time, I also want to be informative. The more people we can make aware the better!
I aim to have a website with lots of different EndoWall Merchandise available so that I can create things that will help raise awareness.”
Do you have any advice for anyone in a similar situation to yourself, whether they are diagnosed with Endometriosis or are suffering symptoms?
“My initial advice to you all would simply be DO NOT GIVE UP ON YOURSELF. Always, trust in yourself and in your gut feeling.
Only you know the pain that you experience but you can control things in your daily life. If you know you can make some changes then encourage yourself to do so. I am trying to make changes bit by bit so that I don’t go back on myself. I have been working to cut dioxins out of my life completely. There is a possibility that the growth of Endometriosis can be increased by dioxins (or that Dioxins could even cause Endometriosis). Which I why I want to try and reduce my exposure to dioxins. It is a case of ‘easier said than done’ but I know it’s important to try
I also recommend giving alternative therapies a try if you’re not succeeding with medical help alone. I use 3 different forms of holistic therapies and have managed to break the vicious cycle. It may not be for everyone but personally I think it’s worth a try. I see a fab Physiotherapist for the Women’s Health Clinic (Heath Hospital in Cardiff, UHW). If you are struggling with your bowels, passing water, using your muscles down there and so on, then physiotherapy might be useful to you too.”
How can people support the EndoWall?
“Currently, the best way to support the EndoWall is by following me on social media (links at the end of the blog) or by joining the ‘EndoWall – The Rising Awareness group’ page on Facebook. I will be posting regular updates, details on upcoming events and photographs of the EndoWall. I’m also organising an Endomeet on 10th March 2018 to celebrate the 1-year anniversary of the EndoWall. This meet is an opportunity for everyone to get to know each other and find a support network. I’ll also be raising money to aid the Rising Awareness Movement. For details on the event, you can message me on social or comment below!
The website is also currently under construction and I hope to have it up and running very soon. Until then all EndoWall goods will be available at the Endomeets!”
Thanks to Jaimee for this very honest, real story and for sharing details on her inspirational awareness project. The EndoWall is based in Cardiff, Wales but we’ve included photos below for you to see Jaimee’s work. For updates on the EndoWall and to join this movement, follow Jaimee on Instagram, Twitter or via the Facebook group.
If you would like to support this project or get involved in anyway drop a comment below, connect on socials or send an email to Jaimee. As one of our Period Pioneers for 2018 Jaimee will be working with us to talk more about the EndoWall and raise awareness of Endometriosis. More information coming very soon!