Simone's Story

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.

Dipika's Story

I didn’t know I had endometriosis until last year, at the age of 41.

My periods were extremely heavy and irregular from when they first started, at 14. The family GP dismissed them as ‘normal’, despite the fact that I was regularly bleeding through my sanitary protection and, often, my clothes - much to my embarrassment.

I went on the pill in my 20s, which helped, but as I approached 30 I began suffering from other symptoms including bowel issues, nausea, period-like pain at random times, and a strange, constant ache in the left side of my body, which was particularly bad in my leg. I saw many GPs who never once mentioned endometriosis. One GP dismissed my pain to the point that I burst into tears out of sheer frustration. And so I soldiered on.

In my mid-30s I was diagnosed with chronic migraines and I came off the pill to see if this helped my headaches (it didn’t). My ‘proper’ periods returned in full force; weirdly, they finally became regular, but they also became increasingly heavy and painful to the point where I was passing out from the pain. Yet again, I was told that this was ‘normal’.

It was only when I had a period lasting nearly 2 weeks - which I was convinced was a sign of peri-menopause - that a sympathetic GP finally referred me to gynaecology ‘just in case’. My first ultrasound picked up cysts on my ovaries that, several scans and an MRI later, were finally identified as blood-filled cysts. When I looked this up online and saw that these cysts are a symptom of endometriosis - a condition that I had long been vaguely aware of, but had never once thought of as something that I could have - it was like a light had suddenly been switched on.

During my wait to see the consultant who would treat me, the Endometriosis UK website was immensely helpful in explaining endometriosis and the potential treatment options. I couldn’t believe the fact that nearly all of the symptoms I’d been experiencing for most of my life lined up with the disease. I finally had answers 27 years after the onset of those awful periods.

I underwent laparoscopic surgery in February 2024. Although I know that endometriosis is a chronic condition and that some symptoms could return, it is a huge relief to finally have my diagnosis and the prospect of at least a short time with reduced pain. I only hope that more research and investment can be put into endometriosis to get quicker diagnoses for those suffering from what can be profoundly debilitating, life-destroying and frustrating symptoms.

Above all, there needs to be a much greater awareness of the fact that painful periods are not normal, among both the public and medical professionals. If I’d known this as a teenager, I could have saved myself many years of suffering.

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