Carla Cressy started modelling at age five and continued until she was 17, but her career came to an abrupt halt because she kept collapsing on set. “It was really embarrassing and I couldn’t do it anymore,” she recalls.
From the age of 13, when her periods began, she suffered from excruciating pain. Yet it wasn’t until she turned 25 that she finally received a diagnosis of endometriosis. By that time, doctors had already removed her appendix, mistakenly believing she had acute appendicitis.
“I was hospitalised for chronic constipation several times. I wasn’t able to eat, I was vomiting and in such severe pain but I kept being told it was a stomach bug,” she says.
Eventually, Carla retrained as a beauty therapist because she felt she was “unemployable and unreliable” due to her health. “I would have a client, then sit in a boiling hot bath to ease my stomach pain. It was horrible, but it was the only way I could earn a living,” the 35-year-old from Essex explains.
Estimates suggest that one in six women with endometriosis leave the workplace because of the condition, which causes tissue similar to the lining of the womb to grow outside it. Carla recently gave evidence to an ongoing inquiry into how endometriosis affects women at work.
Currently, there is no legislation in the UK to ensure workers with menstrual health conditions are treated fairly if they need time off.
The Toll of Delayed Diagnosis
Because her endometriosis went untreated for so long, it developed into frozen pelvis disease, where “everything was stuck together.” The condition destroyed Carla’s reproductive organs and became so extensive that she needed bladder reconstruction surgery and a total hysterectomy.
“Thankfully, I managed to freeze my eggs but I can’t now carry a baby, so if I do decide to have children I will have to go down the surrogacy route,” she says.
While bedridden after surgery, Carla connected with other women living with endometriosis and started online support groups. These evolved into a charity, The Endometriosis Foundation. “It still shocks me that this condition is so common,” she says. “When I was diagnosed 10 years ago, I was told I was too young and that it was rare. We now know that it is absolutely not rare.”
She adds: “A lot of people still believe endometriosis is just a period condition. It’s so much more than that. We’re talking about lung collapse, kidney loss, extensive surgeries, infertility and careers being cut short.”
‘I Threw Up in a Bin at Work’
Abi Smith, 27, originally from Braintree but now living in Lowestoft, was prescribed a gut health yoghurt by doctors when she was 10 and struggling with pelvic pain. When she started her periods soon after, the pain was so bad “I felt like I was dying.”
“I worked in the post office,” she says. “I would have periods where I was at work hunched over trying to serve customers, throwing up in the bin, running off to the toilet every three minutes.”
Like Carla, Abi faced a long delay before she was finally diagnosed with endometriosis at age 21. She feels doctors failed to take her seriously. She is currently going through her third medically induced menopause, which “shuts down” her ovaries and helps manage her pain.
“I’m just completely infuriated by everything I’ve had to go through. I’ve become a very bitter person because of all of this,” she admits.
Abi has applied for disability benefits three times and been rejected each time. She now works as a sales administrator and, despite her pain, must continue working. She feels hopeful that the inquiry is examining how the condition affects women in the workplace, but would like to see it widened. “It’s encouraging because it’s a real struggle to be productive and show up every day. I’ve always worked, I’ve always tried my best to stay in work even though I feel like absolute crap,” she says.
‘It’s Medical Misogyny’
Psychotherapist Dr Sula Windgassen says women with endometriosis are often told their symptoms are “all in their head.” Many have had to quit their jobs, leaving them isolated and more anxious.
“Therapy often becomes a space for exploring alternative careers, hybrid working arrangements, or other ways of maintaining employment. None of those decisions are simple,” she explains.
“Some individuals spend two or three hours every morning recovering from the pain caused simply by going to the toilet. I’ve spoken with women who describe their pain as being beyond 10 out of 10, where all they can do is lie down and endure it. That isn’t something a person can simply recover from and then continue with a normal work day. It’s incredibly sad that more support isn’t available.”
Dr Windgassen is currently researching medical gaslighting and gathering evidence via a questionnaire. “There is a serious problem within healthcare around medical misogyny and unconscious bias. The more people are dismissed medically, the worse their health outcomes are likely to be. We see changes in inflammation, alterations in cortisol patterns, and a range of other biological effects that interact directly with health outcomes.”
‘Endometriosis Has Spread to My Lungs’
Monica Thomas, 34, from Ipswich, had to wait years before she was diagnosed with endometriosis. The condition has now spread to her lungs, and she is due to have lung surgery while also waiting for operations on her bowels and pelvis.
Monica also lives with adenomyosis, where the womb lining grows into the muscle of the womb’s wall; pelvic congestion syndrome, which causes chronic pelvic pain; and Lichen Sclerosus, a chronic inflammatory skin condition that most commonly affects the genitals. “Throughout that journey, I felt incredibly isolated, lonely, confused. I didn’t have anywhere to turn,” she says.
Monica wonders if her health issues could have been prevented if doctors had believed her from the start. While researching her condition, she discovered many other women in similar situations who felt “unheard and unsupported.” She now works to empower other women after setting up the charity Women’s Health Hope, which is due to open a women’s health hub in Ipswich next month.
“For me, it’s been incredibly important to actually give women somewhere they can go so that they can let their emotions out, talk to people, feel supported. Because we don’t have it, we don’t have that support. In a recent study, 84% of women feel unheard by healthcare professionals. It’s a really large amount of women and to be able to give them a place to go where they can feel heard and supported, I think for me it was a no-brainer.”
An NHS spokesperson said: “Medical professionals, including GPs, should follow National Institute for Health and Care Excellence guidelines to diagnose endometriosis. Struggling patients can also receive specialist care for menstrual problems and endometriosis through women’s health hubs, which are available in most areas.”
