"Like so many others, my diagnosis of endometriosis took such a long time, around seven years after I started having symptoms.

My “day job” as a full time athlete requires me to be in good health, to look after myself and be able to push myself physically and mentally, six days a week.

Having spent over 12 years as an international swimmer, I moved to paracanoe in late 2016, which coincided with the start of my symptoms.

As many other sufferers will know, on the bad days the pain is completely debilitating and I wasn’t well enough to get to training, never mind complete the sessions.  On good days, I could just about manage thanks to the medical support team we are lucky enough to work with.

I finally got my diagnosis in January 2021, just 8 months away from the Tokyo Paralympic Games, my Games as a paracanoeist.  Having been trying to find an answer to the symptoms for years, to have surgery so close to the competition was really worrying - but essential.

When I got my diagnosis I reached out to other athletes who had shared their experience and they were so kind in supporting me, sharing advice post-surgery, how to manage symptoms. Having supporters who really understood what I was going through after years of uncertainty was amazing - and I won my first Paralympic gold medal in September.

I think, like many women, getting the diagnosis gives you the power to make fully informed decisions, and that the days when I need to, I can give myself grace and be okay with not training, and not worry what my competitors may or may not be doing.

I was really keen to be that person for others who are also suffering. It was incredible how many people reached out when I put it on social media, with similar stories and how I pushed to get my diagnosis. It took a lot of persistence to get the diagnosis and I wanted to let others know, that it was worth it.

The online community is a beautiful thing, where we can come together collectively with our own experiences and use them for the greater good.

The best tool that I had in my belt before diagnosis was the fact that I tracked my menstrual cycle and it gave me this wealth of knowledge and evidence when I then went to a medical professional.

My biggest piece of advice in terms of seeking a diagnosis is to be persistent, advocate for yourself as often as you need to, and don't take no for an answer if you believe something's wrong."

Thank you Charlotte for sharing your story this Endometriosis Action Month.

• Read more about Endometriosis UK responds to the Government's response to the recommendations made by the Women and Equalities Committee's inquiry into "women’s reproductive health conditions"

This is Deepti's Story

My symptoms started around 12 years ago, when I was 28. Excruciating pain while going to the toilet, painful sex, and secondary infertility were just the beginning of what I now know as my endometriosis journey. In hope of answers, I started knocking on the doors of GPs only to be let down, gaslit, and misjudged.

People often assume my experience must have been with a male GP, but unfortunately, that wasn’t the case. Over the years, I’ve realised it’s not about the gender of the doctor; it’s about their knowledge.

After multiple appointments with no respite, I took matters into my own hands and made the decision to go private. Thankfully, the gynaecologist I saw believed me instantly. She performed a diagnostic laparoscopy, confirming stage 3-4 endometriosis. I was 30 years old when I was told that if I wanted to try for another child, I should pursue IVF immediately. Otherwise, their recommendation was a full hysterectomy with the removal of both ovaries.

That appointment was one of the most distressing moments of my life. On one hand, I finally had answers; on the other, I had walked in thinking, "it can't be that bad". After all, most doctors until then hadn’t even believed I had a problem, and to suddenly be told I had such extensive disease was a shock to the system.

By some stroke of luck, I found one of the rare specialists in the UK at the time who performed radical excision surgery. But there was a catch, it was only available privately, and would cost thousands of pounds. It was a price I had to pay to take control of my health. With his help, I was able to preserve all my organs and, for the next eight years, I lived what I call "pain-free."

I say “pain-free” because, while my pelvic pain disappeared, something new emerged, pain in all my joints. I was referred to rheumatologists and underwent every test imaginable, but everything came back negative. No one could explain what was happening. The only solution they could offer me was more painkillers.

The constant comments have made it harder; 'Why haven’t you had a second child?' 'Are you just too focused on your figure?' 'You look fine, nothing’s wrong with you!' and many more such comments have left deep scars. No one truly wants to know what you’re going through; they just want to tell you you’ll be fine when you know you have a chronic illness. Here, I have to give a shout-out to my husband and my son because they have been my biggest supporters.

The ignorance surrounding endometriosis, even within the medical community, has left me exhausted. That’s why I’ve joined Endometriosis UK as a volunteer, I’m fed up with being dismissed. I want to reclaim my story.

I’m now back in the NHS system since 2023 as my flare-ups have returned. My recent MRI confirmed deep infiltrating endometriosis and adenomyosis, making a hysterectomy and second surgery even more complicated.

Some days, I have zero mobility. Other days, I’m dancing at a party (the after effects of which others with endometriosis will know, but it's nice to feel ‘normal’ temporarily). I never know what I’ll wake up to. This uncertainty has affected every aspect of my life.

But I refuse to be silent. My journey isn’t just about pain; it’s about resilience, awareness, and demanding better for those who come after me.

If my story resonates with you, know this; you are not alone. And together, we will keep fighting.

Experiences like Deepti's of feeling let down and misjudged are all too common. 

Join us in taking action this Endometriosis Action Month and help us demand change for the 1 in 10 women and those assigned female at birth with endometriosis in the UK.

• Read more about "A never-ending cycle of explanation" #EndometriosisExplained

• Read more about Endometriosis Explained: Endometriosis Action Month 2025

• Read more about Urgent Government action needed to improve education for young people and healthcare practitioners: Launch of Endometriosis Action Month

• Read more about Endometriosis: A multi faceted approach to chronic and pelvic pain

Ooi Thye will be discussing a multi-faceted approach to chronic and pelvic pain, including:

• Conversations around different styles of acupuncture
• Health consultation through the lens of Chinese medicine
• Breathwork
• Imagery
• Journaling
• Meditation.

This is Leah's Story

My experience with endometriosis started in my early teens when I became aware of symptoms that interfered with my everyday life, such as severe pelvic pain, heavy periods, and exhaustion. As the symptoms grew worse over time, I decided to get help from a doctor. However, because my suffering was frequently disregarded or misdiagnosed, the path to diagnosis was lengthy and difficult.

I eventually received a diagnosis of endometriosis and adenomyosis following a number of consultations and testing. Since then, I've had three cycles of chemically induced menopause, the longest of which lasted a year, and two laparoscopic procedures. I continue to experience persistent pelvic discomfort that has a major influence on my life in spite of these interventions.

I have suffered greatly as a result of the condition. I've had to quit my job, quit university, and even return my car because I'm in too much agony to drive. On certain days, the agony is so severe that I have to get around in a wheelchair. I'm waiting for a hysterectomy currently in the hopes that it would provide me some relief and return my life to normal.

More often than I would like, I have to defend or explain my endometriosis to friends, family, doctors, and even complete strangers. Since the condition is hidden from the outside, many people find it difficult to comprehend how serious it is. It can be stressful and alienating when friends and family believe I'm exaggerating the agony or that it's "just bad periods."

My interactions with medical professionals have been inconsistent throughout all of this. I've come across sympathetic professionals who listened, offered support, and made me feel that I was not alone in my challenges, even though some of them were dismissive.

While looking for assistance and information during one of my most difficult times, I came across Endometriosis UK. For me, their resources and sense of community have been invaluable. In addition to improving my understanding of my condition, their work has introduced me to others who are genuinely aware of both the mental and physical toll it takes.

I hope my story encourages more awareness and activism for those with this disease and helps others feel less alone. Know that there is support and understanding available if you are dealing with endometriosis.

 

Thank you Leah for sharing your story.

If you have a story to tell, we'd love to hear from you. Click here to Share your story.

While we are unable to share all stories publicly, every story counts to improving our understanding of the diverse experiences of those with endometriosis, informing our work to better support you and campaign for the change you deserve.

I had always had pretty painful periods and, after having my children, I started, around the time of my monthly cycle, to get different symptoms that included stomach pain, rather than cramps. Following some blood tests, I was referred to a specialist. I had started to Google by this point (which sometimes isn’t the best idea!) but I had read about endometriosis and, when I saw the specialist, I asked if I might have it and she told me definitively that I didn’t have it, despite not undertaking any tests. As I subsequently discovered, this is not an uncommon experience.

I joined Bank of Ireland in 2019, and then during lockdown, my symptoms started to deteriorate further. I ended up in A&E with severe abdominal pain and, following that, was seen by an endometriosis specialist, who said that it was highly likely that I had endometriosis and I would need keyhole surgery – a laparoscopy, to investigate. So in July 2021 I had the op and was told that I had stage 3 endometriosis, seven years after I first started getting symptoms.

In terms of day to day impact, I can wake up in the middle of the night with abdominal pain and I have a routine now – I go downstairs, get heat on my tummy, take strong painkillers and wait for the pain to reduce, but that can also happen in the middle of the day when I’m in work and quite often I will have a hot water bottle handy as well as painkillers. I also get a gripping sensation which runs down my legs, caused by the inflammation in my pelvis pressing on my nerves, and hand in hand with those comes fatigue which is like a wave and is really debilitating.

Bank of Ireland has always been really supportive. When I was first diagnosed, I had a fairly new boss, who was male, and I kind of gave myself a bit of a pep talk about being open with him about what was going on as I didn’t want to be on the back foot if I needed some flexibility. I talked to him about my symptoms and how they potentially impacted me in work, and I’ve continued to do that with all of my line managers, who have all happened to be male, and have found them all very supportive. I feel fortunate that we have a hybrid working model, so I can work from home…get a hot water bottle…painkillers etc. But I also know that I could say to my boss and my team “Listen, I’ve been up since 3am and might need to take a bit of time today”…and that’s invaluable.

In 2022, Bank of Ireland made the commitment to becoming an Endometriosis Friendly Employer, which has been a catalyst for talking about women’s health internally. We’ve held a couple of online events where colleagues have talked about their own personal experiences of the condition and we’ve set up an Endometriosis Circle which provides a safe space for colleagues to connect and discuss endometriosis.

I’m really glad that Bank of Ireland has become an Endometriosis Friendly Employer. I’ve been very happy to be open about my condition, but I know not everyone is as comfortable with that. By being part of this scheme, we can ensure that it’s easier for colleagues to have conversations with line managers or colleagues to get the support that they need at work.

Thank you Rachel for sharing your story.

Find out more about the Endometriosis Friendly Employer scheme here.

• Read more about Endometriosis Action Month 2025 #EndometriosisExplained