This is Simone's Story
I've suffered with pain from my first period age 12. I remember being in school ringing my mum crying because of the pain, and other girls laughing at me. I couldn't understand why it was just me that 'couldn't get on with it'. I was taking so many ibuprofen to ease the pain because paracetamol didn't work, which ending up causing additional problems.
At first it would be extreme pain around the time of my period, but as the years went on, I noticed the pain could be at any time. I had also started to affect my bowels. In 2017, I had a sharp, intense pain in my abdomen and after going to A&E, they ruled out appendicitis and organised a routine ultrasound scan. This showed a 10cm ovarian cyst. I was then listed for urgent laparoscopic surgery. After the surgery, they told me that the cyst was a 'chocolate cyst', and my discharge letter said endometriosis. I had no idea what that meant, I'd never heard of it before! I went to the GP and was given a printout from Google and told to research it myself.
Throughout the years, I have been back to the GP several times with varying symptoms such as extreme flare ups where I was doubled over and couldn't move, abdominal/pelvic pain such as pulling, quick sharp 'knife like' pains, triggers from food, bloating and each time I was told it was probably IBS and was told to provide stool samples. Everything was ruled out from IBS to coeliac disease, but they never looked into it further. I was told by my GP that he didn't know enough about endometriosis to advise me on it. It was then that I went to Endometriosis UK and HealthUnlocked and started to read other people's experiences. I realised that all of the symptoms I had been experiencing were linked to endometriosis. Even though I had a diagnoses, I hadn't been aware of the symptoms that weren't as commonly known or listed.
In 2022, I was referred to a gynaecologist who sent me for an MRI scan, this came back showing extensive endometriosis involving my bowel, fallopian tubes and ovaries, including endometriomas (chocolate cysts). Luckily, I was then referred onto an endometriosis specialist who I saw in 2023, he knew everything there is to know about endometriosis and I finally felt I was getting the answers I needed.
Even though I was officially diagnosed in 2017, I had no information, advice or support from medical professionals, no surveillance scans or check-ups. I decided to have a Mirena coil fitted as some people I had spoken to online said it had relieved some of their symptoms, I was told by the GP that this would take 3 months to settle in, unfortunately, for me, it was excruciating having the coil inserted and it actually increased several of my symptoms initially, but after around 10 months, the symptoms did start to improve slightly. 5 weeks ago (at the time of writing (Aug 2024), I underwent my second laparoscopic surgery, this time to excise the endometriosis and remove an endometrioma that meant reconstruction of the ovary, leaving me with 3-quarters of an ovary, and separation of my bowel from my uterus as they were stuck together.
Endometriosis has affected my life since my first period 18 years ago. I have had to take lots of sick days at work, resulting in a negative sick absence leave and affecting my mental health at work, my colleagues are used to seeing me with a hot water bottle on my stomach whilst sat at my desk. I have had to cancel plans with friends and family, who have luckily been very understanding. I don't feel as care-free as I once did, due to worries around flare-ups occurring at any point.
I am so lucky to have such a supportive Wife, Mum and family who understand. I had fertility treatment in 2018 which was unsuccessful and as I am in a same-sex relationship, it costs A LOT of money and I now don't feel I can put myself through the emotions and potential waste of money due to fertility problems that endometriosis may have caused.
Although I have recently had surgery to remove the endometriosis, I am aware that this is not a cure, and it's in the back of my mind that it could come back at any time, it's disappointing to not feel peace. I am hopeful for the future generation of endometriosis sufferers with the work that researchers and organisations like Endometriosis UK are doing, and that things could be easier for them in the future. I feel grateful for this organisation and the support and encouragement I have received by talking to people who are experiencing the same as me.
With NHS gynaecology waiting times at a record high, Simone's experiences of multiple medical appointments, a long wait for a diagnosis and feeling that she did not have the information needed following or before diagnosis are unfortunately all too common.
We hope our new specialist endometriosis nurse helpline, launching in 2025, will address this urgent issue, providing medically informed advice and support.
To help us further this work, you can have your donation DOUBLED at no extra cost via the Big Give today. Find out more here.
