Deepti's Story

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.

Leah's Story

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.

Endometriosis at Work: Rachel's Story

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.

Amber's Story

This is Amber's Story.

I first noticed symptoms of endometriosis when I was a teenager. The pain during my periods was excruciating and far beyond what I had been told was “normal.” Over time, the symptoms grew worse, affecting not only my physical health but also my emotional well-being and daily life.

Despite the severity of my symptoms, it took me several years to seek medical attention. At first, I was dismissed or told that painful periods were "just part of being a woman". It was only when the symptoms began to interfere significantly with my ability to work, study, and maintain relationships that I pushed for answers.

Even after seeking medical attention, it took a staggering 10 years to finally receive a diagnosis. The journey was exhausting and often felt like an uphill battle. I went through countless doctors’ appointments, inconclusive tests, and misdiagnoses. I was often made to feel like the pain was “in my head,” which made an already isolating experience even more difficult.

When I was finally diagnosed with endometriosis, I also found out I had adenomyosis. I felt a mix of relief and frustration—relief that I finally had an explanation for everything I had endured, but frustration at how long it had taken and how much I had suffered in the meantime.

My experiences with medical practitioners have been varied. While some have been empathetic and supportive, others lacked understanding or dismissed my symptoms. This inconsistency highlighted how little awareness and education about endometriosis exists, even among healthcare professionals.

I discovered Endometriosis UK while searching for resources and support online. The organisation has been a lifeline, providing information, community, and advocacy that have helped me feel less alone in my journey. Their work has given me the tools to advocate for myself and connect with others who truly understand what it’s like to live with endometriosis.

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