Edinburgh-West Support Group Leader Johanne shares her story.
My first experience with endometriosis started at the age of 12, 27 years before getting diagnosed.
I knew about endometriosis from a young age as my Mum suffered with the condition. When I started my periods and my monthly cycle wasn't right, my Mum took me straight to the doctors. I was told 'I was one of the unlucky ones', 'It's just a bad period', 'you will just have to get on with it'. I was made to feel it was all in my head and I was just being over dramatic.
The pain was unbelievable and it affected my schooling. I had days off of school due to pain, feeling sick etc. I had to come home on breaks to change my clothes. I later had to take time off work with the pain I was in and at times I had to miss out going out with friends. This was hard because while some friends understood, others didn’t. It was having a big impact on my life. I was still not being listened to, I felt so alone and did not understand why no one was taking me seriously.
By the year 2022, I’d had to give up my career as a hairdresser due to the symptoms I was experiencing. I was eventually given another treatment to try but this was not helping and the pain was getting worse. I had continuous trips to the doctors. I was told my pain I was experiencing was anxiety and again made to feel it was all in my head. I felt so hurt that not one medical professional believed me. So the warrior in me decided to take the matter in my own hands. I thought well if you don't believe me I'm going to make sure someone does.
In May 2023, I could hardly stand with the pain, let alone walk. I got given a telephone appointment with the doctor who prescribed strong pain relief. That evening, I phone NHS24 and was given an out of hours appointment where I was then sent through to A&E and taken straight up to gynaecology. I was extremely emotional as you can imagine. I said “no one believes me, all I would like is for someone to help me”. For the first time in my 27 year journey, the doctor and nurse looking after me said “Johanne, we do believe you and we are going to help you”. I finally felt I was not going insane and what I had been experiencing for years was not normal.
My surgery to diagnose was very difficult. They found stage 4 endometriosis and my organs had fused together. My right ovary and fallopian tube had to be removed along with endometriosis around my bowel. It was a very complicated emergency surgery and I am so lucky to have gotten through it, I will forever be grateful for what the surgical team did for me and they all have a special place in my heart for that.
Through my experience I wanted to give something back and during my recovery I came across Endometriosis UK. I attended a volunteer training day in Edinburgh November 2023 and I’m so glad I did. It was extremely empowering to be in a room of others going through the same condition as myself. I didn't feel alone, I felt emotional, I felt supported, and I definitely felt I had found my tribe. I started up the Edinburgh-West Support Group in March 2024. It is held once a month where those with endometriosis in the local area can come along and share their story, or just come along and listen. It’s a safe space where they are supported and most importantly, they know they are not alone. You know your body better than anyone and if something doesn't feel right, keep advocating for yourself and never give up.
