Endometriosis Awareness Month (March) aims to highlight the chronic illness affecting one and a half million people in the UK – still underdiagnosed and misunderstood by many.

It often takes a laparoscopy (a surgical procedure to access the abdomen) to even be able to diagnose endometriosis, and the average sufferer waits seven and a half years for answers, according to Endometriosis UK. So many people are left with debilitating symptoms – putting their lives on hold.

Here, two women share what it’s really like to live with the condition.

Grace Hart-Coombes, 22, @gracevsendo and host of the Gynae Waiting Room podcast

“I was diagnosed with Endometriosis in March 2021 after almost 8 years of symptoms. Since the moment I started my periods, I’ve had problems,” Hart-Coombes says.

Going to the doctor for the first time with symptoms aged just 14, she was given the combined contraceptive pill and sent on her way.

“Over my teenage years, things got worse, I spent a lot of time in and out of A&E, had 50% attendance at school and was referred to various doctors. The gynaecologists did scans and did not find anything, so referred me to gastroenterologists who did various investigations which were not conclusive. After this, I was referred to a psychologist and told I had anxiety-led abdominal pains at 16.”

Several years later, after taking information to her doctor about endometriosis, she was taken seriously and had two laparoscopies – finally resulting in a diagnosis.

“Prior to my second surgery, I would sometimes have two months off work, where I would be physically unable to even take myself to the bathroom. Last year, I had to change careers due to the physical restraints endometriosis put on my body, I left what I thought would be my forever career [as a physiotherapy assistant] because it was too physically straining.”

Now she works more flexibly in marketing but her life has been constantly disturbed by the condition.

“I’ve grown apart from friends over the years, due to being unable to follow up with plans. There have been many strains throughout the years on all relationships in my life due to them struggling to understand – friends, family, and partners.

“When I have flare-ups, I have to rely a lot on my parents. I’m terrified of not being able to have children, having to have multiple surgeries, and having to manage pain and the mental health that comes along with it. I have been prescribed oral morphine for the bad flare-ups, and can’t go a day without using a hot water bottle or a tens machine.

“My life is completely controlled by endometriosis. I have had to make dietary changes to avoid possible triggers of pain, I have to be careful I don’t over-exert myself. When the pain is at its worst, I struggle to eat, I get extremely nauseous, I suffer immensely with constipation, and I become increasingly anxious about leaving the house.”

Yana Miladinova, 27, @yanamiladinova, a senior account manager in PR

“I was 13 years old when I got my first period. I was 14 years old when I was told to ‘man up’ by the school nurse and participate in PE classes despite my heavy period and horrible pain. After years of drugging myself with painkillers, going to doctor appointments and reading hundreds of articles online, I was diagnosed with endometriosis in 2021,” she says.

Miladinova has had one laparoscopy and is on track to have another, as she says medications do nothing for her debilitating pain.

“Endometriosis impacts your whole body, physically and mentally. I had to stop drinking alcohol and caffeine as they are inflammatory ingredients that intensify my pain. I even tried a gluten-free diet for a while as there was the research that said it could help with endometriosis,” she says.

“Every woman experiences it differently, but it’s usually recommended to exercise and stay fit, so there is less fat in your body that can irritate the endo tissue. But even that could be a challenge as the pain can come at any time, and I have had several occasions where I start crying during my workout – it feels like someone is tearing your flesh from the inside, and there is nothing you can do.”

But it goes beyond physical pain.

“Personally, I think endometriosis has affected me more emotionally and mentally rather than physically. No doctor prepares you for the emotional toll. There have been cases where it affects women’s fertility, so what if that happens to me?”