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.

Lexi

Although the TV adverts would lead you to believe women can do anything, including playing tennis or ice-skating when you’re on your period, I was always aware that your monthly cycle was going to be painful. As a teenager you would usually find me at that time of the month on the sofa with a hot water bottle and a large tub of ice-cream feeling sorry for myself. It was one of those things those of us with a uterus just had to endure. There is no 1 size fits all when it comes to menstruation, so as far as I was concerned my cycle was completely normal.

Fast-forward to my twenties. Over time the pain had slowly increased, often starting a week or so before my period and lasting until a good week after. The pain didn’t sit only in my abdomen, but now impacted my back and legs and often made it difficult to stand or walk. At this point I am blissfully unaware of the term Endometriosis, let alone what it is.

At 24 I was working for a recruitment company, the hours were long and the expectation to work at 100 miles per hour was real. On one particular day my director happened to be in and had noticed in between calls I was either hunched over my desk or quite literally curled up on the floor. He obviously asked what was wrong, I explained it was my time of the month and his response was "surely it shouldn’t impact you like this! Remember we have private medical insurance, I think you need to go and get checked".

My first surgery was in 2017 and I was diagnosed with stage 4 endometriosis. The scar tissue had been found in and around my uterus, fallopian tubes, ovaries, and bowel. My consultant described it like someone had poured concrete in the gaps around my pelvis and had stuck my organs together. Through laparoscopic surgery, where possible the endometriosis was removed, but there was only a 30% chance it wouldn’t reappear. Endometriosis feeds off hormones and to stop the spread I was offered an injection called prostap for 6 months. This puts me into medically induced menopause, giving me a break from my endo symptoms but with all the possible side effects of menopause. Since diagnosis, I’ve had 4 rounds of prostap, 5 additional surgeries and the endo has now been found on my rectum, bladder and kidneys.

I am now currently waiting on a surgery date that will remove the largest group of endometriosis tissue on my bowel and rectum. This will leave me with a permanent stoma bag, but this has been a difficult thing to wrap my head around.

Having that safe space to talk openly through the Endometriosis UK Support Group,s have been a blessing. I have a wonderful support network around me, met some incredible and inspiring people, and I feel very lucky to be able to support other women and those assigned female, dealing with Endometriosis.