Endometriosis Awareness Month 2023: Lauren’s story
Lauren first went to see her doctor about intense period pain in 2013, when she was 27 years old. The pain was intense and in unusual places: not just her stomach and back, the usual sites of menstrual cramps. Her doctor told her to take more painkillers.
The pain got worse.
Over the next few years, Lauren returned to the doctor five times. The advice she received on these visits varied from, being told to take more painkillers again, to ‘it’ll probably get better when you have children.’ She started doing research herself and stumbled across the term ‘endometriosis’.
Endometriosis is a condition, often lifelong, where tissue similar to the lining of the womb grows where it shouldn’t. It can grow on the other reproductive organs, like the ovaries and fallopian tubes, but also anywhere else in the body, causing severe pain and discomfort. Pain during sex is also common in women with endometriosis, as well as digestive and reproductive difficulties. It’s not known what causes it, or what could cure it, apart from surgeries for removing the tissue from affected areas. Doctors tend to prescribe painkillers and sometimes hormone medication.
‘I thought there was a chance that might be what it was, so I told the doctor,’ says Lauren. ‘The doctor agreed that it could be that, but said they couldn’t do anything about it. That actually isn’t true. There are lots of things they can do.’
Lauren kept going back to the doctor. After a few years, she had a diagnostic operation, to investigate exactly what the problem was.
‘The surgeon found a little bit of scar tissue,’ Lauren says. ‘It wasn’t very much, only a little bit, so he did sort of make me feel as though I was overreacting.’
Lauren wasn’t overreacting. Over the next couple of years, the pain got worse. Eventually, Lauren had the chance to see an endometriosis specialist and was booked in for another laparoscopy. A laparoscopy is a type of surgical procedure that allows the surgeon to get inside the stomach without having to make large incisions, with the use of a camera. By the time the specialist was finally able to see inside Lauren’s stomach, the endometriosis tissue was everywhere.
‘The scar tissue had clumped everything together,’ Lauren explains. ‘My ovaries, my uterus, my bladder, part of my digestive system… it was all in one big lump. After the surgery of removing the tissue [which took seven hours] the surgeon showed me the before and after pictures. In the ‘before’ picture, you couldn’t work out what was what, whereas in the after one, it all looked anatomically correct, as you’d expect it to be.’
This all happened in lockdown, in 2020. Right at the beginning of the pandemic, Lauren was hospitalised with a ruptured endometriosis cyst.
‘That was pain like nothing I’ve ever experienced,’ Lauren says. ‘They kept me in for four days. That was when I decided that I really had to get it sorted out. I’d already got the ball rolling with a specialist, but then my husband and I organised the big operation ourselves.’
Lauren had separated from NHS care at this point. She pursued help from a specialist through the health insurance provided by her husband’s work, but even that didn’t cover the cost of the laparoscopy. According to the World Health Organisation, roughly 10% of women and girls worldwide are affected by endometriosis. That’s 190 million people. Of those 190 million, not all are going to be able to fund their own treatment, which leaves a lot of people in a lot of pain.
Lauren is soft-spoken over Google Meet, and yet from her account, it’s clear she’s made of steel. There has to be an ironlike strength powering her, that’s made it possible for her to face incredible pain every day and crack on. She’s spent most of her working life as a teacher — a physically demanding job. She’d have to ask colleagues to cover her classes during particularly bad bouts of pain, while she went somewhere for a quiet 10 minutes to recover. It was only when she became a deputy head and spent most of her day around adults that they registered the heat pads and hot water bottles she held close to her, the way she sat, hunched over herself at her desk, fighting waves of agony.
Her colleagues didn’t think the way she was having to live was normal, and nor did her then-boyfriend, now-husband.
‘They all said it wasn’t right,’ Lauren says. ‘Now, looking back, I can’t believe I put up with it for so long.’
Sometimes putting up with it is the only option available to you. Staring the reality of a situation in the face can be frightening — denial can work as self-preservation when you have a chronic condition. If you think too regularly about the ways in which your illness inconveniences you or makes life difficult, you can struggle to get out of bed, particularly when there’s no known cure. Sometimes, it takes an outsider to point out the gaping wound to which you affix a neat plaster every day, and get you to seek the treatment you need.
‘Three years ago, before the surgery, I was a very different person,’ Lauren says. ‘I don’t think I realised it was getting me down. I’m generally quite a positive person. A lot of my colleagues said they had no idea what was going on. Just before I had the operation, I did a bit of fundraising for Endometriosis UK. That’s when I told a lot of them about my journey for the first time.’
Two and a half years after surgery, Lauren is pretty much pain-free. She holds a hand to her head and says, ‘touch wood’ after saying this, but then she adds: ‘I will happily take these two and a half years, or however much longer I get. It’s been amazing. The last consultant, the one that did the big operation, obviously did a very good job.’
Lauren got to this point by doing her own research, looking up who was local, and who the specialists are. And she wants to talk about it to help other people understand that they shouldn’t have to settle for lives that are defined or restricted by pain.
‘I’m open about a lot of things, she says. ‘I think a lot of things should be discussed more. When I was a teacher, I would always be the one called upon to do the relationships and sex education (RSE) talks with the older children. It can be awkward, but you have to talk about these things. Nothing will ever change if no one talks about the difficulties they face.’
Now, pain-free, Lauren brings this openness and desire for positive change to her role as a content writer for Twinkl Digest and the UK SEND team. Drawing on her wealth of experience, she provides advice for educators teaching children with special educational needs or disabilities.
‘I only started in September,’ she says. ‘But I’m really enjoying it. It’s a very different life to teaching. There’s a lot of support.’
Want to read more?
Lauren’s written this article about educators teaching with chronic health conditions.
To find out more about Endometriosis, check out Endometriosis UK.
