Hayley

Hi my name is Hayley and I was diagnosed with Endo back in 2010. However my journey began when I was 13 years old, and I was hospitalised with suspected appendicitis, after 3 days stay in hospital they couldn't find the cause of my pelvic pain and just told me I must just be constipated, this started the relentless journey of drs telling me I have IBS or "it's normal" believe me what I was going through wasn't normal. The pain would keep me up all night crying, the bleeding was never ending. I struggled a lot at school I would miss days or end up on the school nurses bed doubled in pain, not to mention the embarrassment of leaking through my skirt/trousers. I would bleed during ovulation which was painful too, periods lasting weeks, countless drs appointments with no clue as to what was wrong, I felt maybe It was in my head..so.i gave up going to see anyone..It wasn't until I moved to London and saw my GP as it became unbearable,  my GP  uttered the words I wanted to hear " it's NOT normal" and finally I was referred to a gynecologist and this is when I first heard the words Endometriosis, then after my laparoscopy in 2010 it was confirmed. I had 2 more ablation surgeries after that, but still the pain and bleeding didn't let up and just like school it impacted work and I was put on sickness reviews and looked over for promotions.  So in 2022 I made the decision to have a full pelvic hysterectomy aged 39. I had 9 months relief before symptoms returned, mainly bladder but also bowels. I saw my current GP who is actually amazing and he agreed that endo was back. Referral back to gynecology who didn't want to know, sent me to pain management who told me the pain was due to my weight, I felt like I was back at square one,  but luckily my GP has my back and I was referred and accepted at an endometriosis treatment centre..I'm waiting an appointment. I'm also under urologists and awaiting Botox in my bladder. Endometriosis took a lot of my life I never felt I could have a relationship until I mety partner in 2023 who gets it.....I decided now was my time to give back and help support those who are where I have been, as the support I received from my support group has been amazing, it's a place where I can be me and my mask can come off..I look forward to supporting you all on your journey.

Lexi

Although TV adverts would have you believe women can do anything while on their period, playing tennis or ice-skating without a second thought, I always knew my monthly cycle would be painful. As a teenager, you would usually find me on the sofa with a hot water bottle and a tub of ice cream, assuming it was simply something those of us with a uterus had to endure. There’s no one-size-fits-all when it comes to menstruation, so as far as I was concerned, my cycle was normal.

By my twenties, the pain had intensified. It often started a week before my period and lasted a week after. It spread beyond my abdomen to my back and legs, sometimes making it difficult to stand or walk. At that time, I had never even heard of endometriosis.

My first surgery in 2014 confirmed stage 4 endometriosis. Scar tissue had formed around my uterus, fallopian tubes, ovaries and bowel. My consultant described it as though someone had poured concrete around my pelvis, sticking my organs together. Laparoscopic surgery removed as much disease as possible, and I was later given Prostap injections to induce a temporary menopause to help with the pain.

Since then, I’ve had five further surgeries and several rounds of Prostap. Endometriosis has also been found on my rectum, bladder and kidneys. At one point I was preparing for major bowel surgery that could have left me with a permanent stoma, something that was incredibly difficult to process, however starting a family before this was a priority.

Like many people with endometriosis, fertility was always a concern. When my boyfriend and I decided to try for a baby, we were advised that IVF would give us the best chance because of the impact the disease had already had on my body. It was an emotional and physically demanding journey, but one that ultimately led to us welcoming our daughter in December 2025.

Living with endometriosis can often feel isolating, which is why the Endometriosis UK support groups are so important. Being able to talk openly with others who truly understand can make an enormous difference. After experiencing that support myself, becoming a volunteer support group leader felt like a natural step. I wanted to help create the same safe, understanding space for others navigating this condition; somewhere people can feel heard, believed and less alone.

Zainab

Hi, my name is Zainab. Ever since I can remember, my periods were excruciatingly painful—characterized by heavy bleeding, agonizing pelvic and back pain, and constantly running through pads. Yet, every time I went to the GP, I was dismissed. Struggling through work was a regular ordeal, and I often found myself sitting at my desk with a hot water bottle, even in blazing summer heat, while managers gave me puzzled looks. For years, I denied that what I was experiencing was abnormal. I tried countless treatments—both medical and holistic—but nothing seemed to help.

It wasn’t until a close family member was diagnosed with endometriosis and recognized the symptoms in me that I decided enough was enough. Encouraged to investigate, I pushed my GP for a referral to a specialist. That’s when I finally understood that the symptoms I’d silently battled for years were all linked to a condition that impacts so many women. Sadly, it still took another two years and numerous appointments to receive a diagnosis: stage 4 endometriosis and adenomyosis.

Endometriosis UK has been a lifeline for me. It has provided not only vital information to help me understand my prognosis but also a supportive community where I can share my struggles, frustrations, and moments of joy. This condition can be isolating, but finding a space where others truly understand has been invaluable.

My mission is to ensure that everyone battling this chronic condition has a safe space to turn to. I’m committed to tirelessly campaigning to raise awareness and improve understanding of endometriosis, and I remain hopeful that, in my lifetime, we will find a cure. Together, we can make a difference.