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March is Endometriosis action month. I am raising money for Endometriosis UK because they represent a matter that I hold very close to my heart. I am determined to do something to raise awareness, advocate for others with this horrible disease and start the conversation on the current crisis within women’s healthcare. I am doing this not only for myself but for the millions of others who also struggle with endometriosis, for the people who feel like no one is listening to them and for all those who cannot advocate for themselves.

I will be attempting to climb all 7 hills in Edinburgh during March and will be trying to reach 10 summits within and around the city. This is something that I will find particularly challenging as I also struggle with HSD/HEDS and POTS symptoms, which often impact my mobility. I am determined to complete the challenge despite this as I know how important it is to raise awareness.

Endometriosis is a chronic, lifelong, full body inflammatory disease. Endometriosis occurs when cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. These cells can grow and change in response to hormones in the menstrual cycle, this can cause inflammation, pain and scar tissue. Endometriosis is most commonly found on the lining of the pelvis (peritoneum) and may occur in the ovaries and involve other pelvic organs, like the bowel or bladder. Less commonly, endometriosis can also be found outside the pelvis, such as in the chest, diaphragm and lungs.

Endometriosis affects 1 in 10 women and those assigned female at birth from puberty to menopause, although the impact may be felt for life. In the UK, that’s over 1.5 million from all races and ethnicities living with the condition. This is a similar prevalence to asthma or diabetes yet there is such a limited amount of research in comparison.

There is currently no known cure for endometriosis and no treatment. Only management exists for this condition (in the form of surgery and medication). However, this is not guaranteed to relieve symptoms for everyone. Additionally, endometriosis currently takes on average 9 years and 4 months to diagnose in the UK. This is unacceptable, people with this condition deserve so much better.

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Esmé’s story:

For the past decade I have experienced a number of increasingly debilitating symptoms, and pain on a level which some people will never experience. Over this time, I have attended countless GP appointments, received several blood tests, had a number of scans performed, all whilst receiving no answers.

When I was 12 I started my period, which is when I started experiencing symptoms. My periods have always been painful, heavy and irregular. I was taught that this was normal and that it’s just “what being a woman is about”. By 14 I knew that something definitely didn’t feel right, my life felt like it was constantly being put on pause whenever I got my period. I was missing school, work and quality time with my friends. At this point I attended my GP practice to express my concerns over my symptoms. I was told that everyone experiences the same level of pain with their periods, that it was normal, or maybe I was just too sensitive. I was eventually prescribed the contraceptive pill in hopes this would improve the irregularity and pain I was experiencing with menstruation. Unfortunately this didn’t happen and only caused additional symptoms and a significant decline in my mental health. I was then prescribed another birth control medication, which only worsened the problem. My periods became more irregular, and nothing was relieving the pain I was experiencing. My attendance at school started dropping rapidly and it felt like no one was listening to me. Over the next few years I was prescribed different pain relief medications and given the contraceptive implant.

Fast forward to 2024 when I moved to Edinburgh for university. My symptoms were still not under control but the implant had stopped my periods which gave me some temporary relief. 6 months later, my periods returned even worse than before. I was bleeding for weeks at a time and becoming increasingly unwell. In the summer of 2025, I had been on my period for almost an entire month and I was very ill. I went back to the GP and asked for a referral to gynaecology. I was told that this would be completely unnecessary, as the symptoms were probably just related to my contraceptive implant, but that I could get my bloods tested. Inevitably, the full blood count which I was ordered did not reveal the whole picture. My levels were “normal” and I didn’t receive any more help. I was in pain all the time at this point, feeling nauseous, severely dizzy and generally exhausted. I was struggling massively with university, my mental health and was unable to work. I called my GP out of urgency as I couldn’t get another appointment for two weeks. They told me there was absolutely nothing they could do to help me and I would just have to wait. This is when the pain became completely unbearable. I was unable to move, walk, eat or sleep. So I attended A&E as I felt I had no other option. I was then given morphine because the pain was so severe. I had a more comprehensive set of blood tests performed, was prescribed medication to stop the bleeding and discharged. This was helpful but I still had no answers and no long term relief.

Several GP appointments later I had a pelvic examination and an ultrasound performed. I was given the results over the phone where I was told “everything is normal”. As much as I wanted to believe this was the case, I knew there was something they had missed. So I asked what the next steps were and whether it may be possible that I have endometriosis. I was then dismissed and told that I definitely didn’t as I was too young. Instead my doctor said “how about you just go on the pill”. Given the experience I previously had with birth control pills I thought this was a completely unacceptable and insensitive recommendation. I begged for a gynaecology referral and eventually I was referred, but it had taken almost a 3 year fight. At the same time this GP told me I just needed to try to get on with my life, stop seeking answers I may never find and stop wasting my life at doctors appointments. This destroyed me, as if I had been enjoying attending the doctors every week? I then found out that the gynaecology waiting list I had just been added to was over 2 and a half years long! I knew I couldn’t wait that long, I felt hopeless and betrayed by the people that were meant to look after me.

Soon after this was when I first heard about the EndoSure test. The EndoSure test is a non-invasive, 30-to-60-minute diagnostic procedure used to detect endometriosis and adenomyosis by measuring the electrical activity of bowel smooth muscle. It uses Electro-ViscoGraphy (EVG) technology to identify a specific "GIMA" biomarker, offering up to 95-99% accuracy as a faster, pain-free alternative to laparoscopic surgery. Although this test is currently being trialled in NHS hospitals in the UK, it has not yet been officially approved. This meant that I had to pay privately to receive this test. I am fortunate enough that I have family who are in a position to afford this, however I am aware that many people are not. Despite the cost it felt necessary, considering the limited options I had left. I received the results the following week which were positive, suggesting there was a very high likelihood that I did indeed have endometriosis.

Following this I paid for a private consultation with an endometriosis specialist in Edinburgh. This was the first time I had ever felt listened to, believed and like I was actually being taken seriously. We discussed my symptoms and she agreed that they were very indicative of endometriosis. She advised me to have an MRI scan performed and warned me that endometriosis rarely shows up on an MRI scan, unless it is quite severe and deep infiltrating (stage 3/4). Due to this, I expected that the MRI would likely not show anything and I would be no closer to getting answers.

On the 4th February 2026, I received a call from the specialist to discuss the results of the MRI scan. I was told that the scan had showed quite a lot of evidence to suggest I have deep infiltrating endometriosis and that my ovaries appear to be fused to my womb (likely by an endometriosis lesion). We then discussed next steps and it was highlighted to me that laparoscopic excision surgery would probably be most beneficial for me. Hearing these words gave me such mixed emotions. I felt relieved to finally have an explanation for my debilitating symptoms, but so incredibly disappointed that I had been screaming into the void of NHS healthcare for so many years prior.

My trust in doctors has been destroyed and I feel neglected by the very system which should be looking after me, keeping me safe and healthy. I grieve for younger version of myself who knew there was something wrong in her body. The girl who was dismissed, ignored, ridiculed and lied to. I grieve for the life I will never get to have, the teenage years I can never get back and the permanent damage this has inflicted upon my mental and physical health. I am so upset that my doctors allowed this disease to progress to the severity that it has. I know I didn’t deserve that but I also know that there are millions of people who share similar stories to me and they do not deserve this either.

We need something to change. The healthcare system is failing so many women and those assigned female at birth in so many ways. This is why I have joined with Endometriosis UK and have decided to participate in the 1 in 10 challenge for endometriosis action month. I would be eternally grateful for anyone who is able to donate or even just share this fundraiser to friends and family.

Thank you for listening to my story,

Esmé

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