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I would end up in A&E because I assumed something was really wrong”: 2 women on the realities of living with endometriosis

I would end up in A&E because I assumed something was really wrong”: 2 women on the realities of living with endometriosis

Like many women before her, Bettina was unaware she had endometriosis. All of the signs and symptoms were there – but no diagnosis. The disease – which causes tissues that are similar to those that line the uterus begin to grow in other parts of the body, such as the ovaries or fallopian tubes – is extremely painful. Having been on the pill since the age of 16 (to ease her “really bad periods”), it wasn’t until she came off it at the age of 25 that she started to “realize that something must be quite wrong with me”. 

“I experienced a lot of hair loss and I had lots of weird hair growth on my chin,” she recalls of that trying time. “I didn’t get my period for months on end. I didn’t feel great. And obviously, 25 is quite a young age to not feel great. So after months of this, I remember cutting my hair short because my hair was falling out so much. [I experienced] mood swings, weight gain – lots of weird and wonderful things happened [to me].”

For Bettina, chef, recipe consultant and author of Celebrate: Plant Based Recipes for Every Occasion, it wasn’t until she visited a gynecologist that she finally got some answers. “I was basically diagnosed with polycystic ovary syndrome and endometriosis, which was quite a shocker. And I was told that the likelihood of me having children was not high … And I remember being on my own and thinking, ‘Oh my God, I'm not going to be able to have children’, which is obviously like a massive thing to be told quite clinically.”

Many women live with endometriosis

Bettina isn’t alone in her experience. One in 10 women of reproductive age in the UK lives with endometriosis. Many women – roughly 190 million, according to WHO – across the world have been diagnosed with it. And they’re all in agreement: it causes debilitating pain. 

“I began my period at the age of nine and pretty much straight away they were very heavy and painful, especially in the first few days,” recalls Sarah, a 24-year-old freelance journalist and student living in Nottingham. “But around the age of 12 things seem to intensify to the point that I was missing school and bleeding through uniforms every month. I would even end up in A&E because I assumed something was really wrong and maybe my appendix had burst – but I was always told it was ‘just period pain’ and to ‘deal with it’.” It wasn’t until she insisted on her GP sending her to A&E after six weeks of “continuous heavy bleeding” that she was diagnosed with endometriosis. “My symptoms were never taken seriously and to some extent still aren’t.”

In 2017, it took on average 7.5 years for a diagnosis and in 2020 an inquiry by MPs found that the rate hadn’t improved in a decade. Women’s symptoms often get dismissed. For Sarah, her parents were even told that she was “making it up” and “doing it for attention”. It’s been nearly six years since then and she says it has “impacted every aspect of my life”. “It took me twice as long to complete my degree. I can only apply to jobs that are remote/work from home or located somewhere with a good endometriosis doctor nearby,” she says. “I’ve lost friends because I’ve had to cancel plans multiple times because of the pain. The unpredictable nature of the disease means I have to plan my life around the condition rather than the other way around.”

How is endometriosis treated?

Here’s the rub: treatment for the condition is no easy feat. “Endometriosis can only be diagnosed definitively by a gynecologist during an operation looking inside your tummy,” explains Dr Ellie Rayner, founder of The Maternity Collective. “But as this is invasive and can carry the risk of complications and there can also be a delay while waiting for surgery, your GP or gynecologist is likely to suggest other, non-surgical treatments first.” 

She continued: “If pain and discomfort is your main issue, then pain killers either bought over the counter or prescribed by your doctor may be sufficient to manage your symptoms. As endometriosis is hormone driven, one of the treatment options is hormonal treatments such as the combined oral contraceptive pill (COCP), an intrauterine system (IUS) or the progesterone implant or injections. These hormonal options are used to reduce or stop you ovulating (releasing an egg from the ovary) and therefore reduce the hormonal stimulation of the endometriosis allowing it to shrink. Unfortunately, these types of hormonal treatments are contraceptive, so are not suitable if you are trying to conceive. If painkillers or hormonal treatments do not control your symptoms then you may be referred to a gynecologist who may recommend surgery to formally diagnose and treat or remove areas of endometriosis. Surgery is usually a key hole operation (laparoscopy) and areas of endometriosis are destroyed or removed while you are under a general anesthetic. Unfortunately, there can be more severe cases where major, more complicated operations are required and you may be referred to a specialist center for this type of operation if necessary.”

It’s a process that Sarah has experienced first-hand. “After my diagnosis I was put on the pill for a few months. When they realized that the pill wasn’t doing anything – I carried on bleeding, having pain and also had cysts/endo on my ovaries – I was referred for surgery,” she says. Fast-forward to 2022, and she’s “had three surgeries (one exploratory and two excision), been on several hormonal methods (pill, injections, IUD, chemical menopause). I no longer have periods and haven’t for four years, but I still have daily pain which is debilitating.” 

Celebrities have shared their experiences 

Singer-songwriter Dolly Parton revealed in Acting For America, that after collapsing onstage in 1984, she was later diagnosed with the disease, too. It led to a depressive episode for the singer as she had to undergo a partial hysterectomy, resulting in her no longer being able to naturally conceive. And former Love Island contestant, Molly-Mae Hague recently underwent surgery for the condition. Back in the summer of 2021, she shared a YouTube video talking about the level of pain she was experiencing. “I obviously don’t know what labor feels like but they’re to the point I literally can’t stand up, I’m screaming in pain, no painkiller will make me feel any better, I have to take days and days off work,” she said. “I feel like I’ve been in a car crash after I’ve been on my period, it’s not normal.” Currently, there’s no cure for the condition and treatment usually involves controlling the symptoms. 

This is a route that Bettina, now 38, has gone down. After her diagnosis, she started doing a lot of research as she launched her wellness business (leaving the food and beverage industry behind). “I had a friend who was a qualified nutritionist [who I consulted]. And I started doing lots of different things basically to try and alleviate the symptoms,” she says. With PCOS – a common condition that affects how a woman’s ovaries work – she knew she needed to control her insulin levels. “I cut out sugar. I went on a low GI diet. [I found] exercising to be very beneficial. So I’ve tried lots of different things to make it better. And with a lot of changes over time, and a lot of different lifestyle changes, I interestingly enough, became pregnant later.” Now with a daughter, Bettina is certain that, for her, sugar and stress are “big culprits” when it comes to controlling her PCOS and endometriosis. “If I go on holiday, and I kind of fall off the wagon, I can definitely feel my endometriosis and PCOS symptoms creep back up,” she says. 

But as both women rightly point out, endometriosis is complex and individual. “In my case, my first excision surgery really helped but within three years my endometriosis was back,” Sarah says. “And after my second excision surgery, which happened just recently, I’m still in a lot of pain. I now know my body’s limitations and don’t push myself. It takes a while to figure out what works for you but the most helpful has been surgery in my case … Trust your body, if you feel like something is wrong then fight for the treatment. You have the right to be taken seriously.”

For more information and support, visit https://www.endometriosis-uk.org and/or https://www.endofound.org/