Stop belittling endometriosis: it’s so much more than a ‘bad period’
When Emma Williams-Tully was ten years old, she woke up in the middle of the night to find herself surrounded by a pool of blood. After rushing into her parents’ bedroom, her mother explained that she’d started her period. But as someone with endometriosis – a condition impacting around 10% of reproductive age women, girls and those assigned female at birth – this was only the beginning.
Endometriosis sees cells similar to those found in the lining of the womb growing elsewhere in the body causing a myriad of symptoms, including immense pain, fatigue, mental health repercussions, difficulty having sex and more. “From then on, I'd have 14-day periods where I'd be in the most debilitating pain. I'd have to wear two sanitary pads and I'd still be soaking through them, onto my school uniform,” the 39-year-old from Wrexham explains.
Despite these extreme symptoms, which would only go on to worsen, Emma spent years dealing with doctors who were either seemingly clueless about her condition, glossing over it as a ‘bad period’ and telling her she was ‘overthinking things’, and who were reluctant to properly investigate her symptoms.
Heartbreakingly, research from Endometriosis UK, a leading charity for the condition, confirms Emma is far from alone in her experience of being gaslit and overlooked: 78% of women with endometriosis have been told they were ‘making a fuss about nothing or similar’ before their diagnosis. A diagnosis which, on average, takes more than 10 GP visits and eight years to be confirmed.
And it’s not just the medical community who carry around misconceptions about the potentially life-changing condition: over half of the population (54%) don’t know what endometriosis is at all - and of those who have heard of it, 56% say they couldn’t name any symptoms. This is despite endometriosis first being discovered more than 120 years ago. Since then, the condition has been found to impact every part of the body, including (in rare cases) the lungs, brain, and eyes.
One woman, Freya Gwinnett, tragically died in 2023 at the age of 28 after experiencing more than fifty instances of catamenial pneumothorax (a rare condition where a collapsed lung occurs in sync with a patient’s menstrual cycle), one of the more dangerous symptoms of her thoracic endometriosis – which is when endometriosis patches are found on or around the lungs.
In Emma’s case, instead of referring her to a specialist who could have recognised the signs and created an early intervention plan to stop her endometriosis from worsening, Emma’s GP initially put her on the contraceptive pill at the age of 13 as a way of masking the symptoms – but not trying to understand them. It’s an approach many doctors take for period-related issues, despite numerous women not wanting to put hormones in their body.
“[Even while on the pill] I'd still be on the bathroom floor rocking back and forth like a mad woman,” says Emma. “It was only when I was 16 that my doctor finally referred me to a gynaecologist, but when they did an ultrasound, everything ‘looked hunky dory’ in their words.” This, she adds, is because endometriosis can often only be definitively diagnosed via a laparoscopy (a type of keyhole surgery).
It was a full ten years after waking up surrounded by blood that Emma heard the word ‘endometriosis’ associated with her story for the first time. Once her medical team had landed on this idea, they decided to induce her into a chemical menopause. “The depression was instant. Mood swings, dripping with sweat, I was a completely different person overnight. But the pain did improve.”
Inducing temporary menopause is not an uncommon option offered in the endometriosis space, but while it can help relieve pain in the short-term it’s far from a permanent solution – and for Emma, menopause symptoms presented a whole new set of struggles to contend with.
Faye Farthing, Head of Communications at Endometriosis UK, agrees more needs to be done to help those with the condition, saying, “Comments such as ‘it's all in your head’ or ‘it's just part of being a woman’ are still heard by patients all too often – and it's time that changed. Remarks like this need to become a thing of the past.”
Farthing adds that the ever-growing wait time (despite increased awareness) for a diagnosis is ‘shocking’ and that a “lengthy wait means a delay in accessing treatment, during which time the disease may progress, leading to worsening physical symptoms and a risk of permanent organ damage”. Surgery to remove layers of endometriosis, scar tissue and other associated elements, like cysts, is generally deemed to be the only effective treatment (but still not a cure). However, there’s a real shortage of specialists in the UK, waitlists are long and many sufferers get into debt trying to fund private surgeries.
Emma is passionate about dispelling the 'bad period' myth:
“Months [after being induced into chemical menopause], I had another surgery and he found stage four endometriosis everywhere. It was rampant, all over my bladder, bowel, uterus, ovaries, all over my back and in my hip,” Emma shares. “At the age of 31 [after having her daughter], I had a radical hysterectomy, but it took three surgeries to perform, because the uterus and the bowel were so stuck together.”
Elsewhere, she suffered complications from other operations (Emma has had 11 in total), one of which resulted in her needing an ileostomy bag. Another involved relocating her bladder. Now, Emma is unable to work and sometimes needs a crutch to walk, due to the immense fatigue that her endometriosis causes – an often overlooked side effect.
“A lot of people have this misconception that it’s just something that remains within the uterus, and that if you have some paracetamol and ice cream you're going to be absolutely grand,” Emma reflects. “But I wouldn't wish it on my worst enemy. It's a mind-numbing pain, whether you’re stage one or four, and it’s soul-destroying. It’s impacted so many areas of my life. Endometriosis is a poison that doesn’t care where it goes.”
A whole body disease
For Hadia Aslam, 28, a charity worker in Edinburgh, being gaslit by medical professionals even happened when she worked as a fertility nurse herself. “One day, I had to call my charger [lead nurse], saying, ‘I'm so sorry. I'm having a really bad time with my period and I can't walk, or do anything’ and she replied ‘We're all women, we all have periods’ and I was mortified. It left me thinking maybe I’m being weak and everyone feels this way.”
During one particularly bleak moment, Hadia recalls bleeding through her scrubs while assisting in an operating theatre. “I was in so much pain and there wasn't really any sympathy, it was just like ‘Aw, is it a bad period?’. No one understood, even though we worked in IVF and infertility [and endometriosis can lead to fertility issues for some].”
On the flipside, and although it was far from instantaneous, Hadia’s former career path is also what ultimately led to her diagnosis. “As I met more patients and heard their stories, I remember looking at one file and seeing the word ‘endometriosis’. I didn't really know what that meant, but I could see it was why the patient was getting IVF. When I had a chat with her, she told me her story, of her history with periods and how her condition has affected her, and I was like, ‘Oh my goodness, this is my entire life’.”
Hadia Aslam shares her endometriosis journey online to fight back against misconceptions:
Hadia says although she encountered a lack of support from some colleagues along the way, other doctors and nurses in her clinic were on hand to offer advice and encouraged her to go to her GP – armed with the facts – and push for answers. “That’s what I did,” she says, highlighting that it shouldn’t take being a medical professional yourself to be taken seriously.
Cultural norms can also intersect with medical misogyny, Hadia adds. “I'm very lucky that my mum is supportive and my husband's amazing, but in South Asian culture, often it’s very much like ‘you're being a bit dramatic’, and it can be the same on social media.” She refers to Australian radio DJ, Marty Sheargold, who recently sparked major backlash after falsely claiming that endometriosis is ‘made up’, as just one example of female pain being minimised and disbelieved both on- and offline.
Now, after surgery and trialling different forms of medication (including one that temporarily induced menopause), Hadia is waiting to hear what her next steps are and how she might best build a longer-term treatment plan. “Nobody knows what to do and the issue stems from a lack of research within women's health. But you have to keep going,” she shares. “I’ve wanted to give up so many times, but you have to keep chasing your GP, calling the hospital where you're getting surgery and asking if there's any cancellations [...] Feeling like you’re being proactive is helpful, as is finding a community of people who understand what you’re going through.”
Medical misogyny is real
Untangling misconceptions around the severity of endometriosis cannot happen quickly enough for Lily Elms, 26 from Shropshire – and she too is clear that more specialists are desperately needed.
As well as it being an unhelpful barrier when trying to advocate for yourself in a medical setting, for Lily, the ‘bad period’ myth has also caused her severe mental distress. “[Before having it confirmed that I have endometriosis and adenomyosis], I’d been convincing myself that I was going insane and that I've just got a low pain threshold. That I need to get a grip, because all the other women in the world seem able to deal with periods and pain, but I can't. To later have it confirmed I have endometriosis, it was like ‘Right, okay! I’m actually not insane!’.”
Like Emma and Hadia, Lily had a long road to getting said diagnosis and was initially put on the pill as a teenager after reporting excruciating periods – which saw her vomit and pass out – to her then-GP. “They just said ‘Oh yeah, that's normal, you're a woman now. You’ve got to deal with it’.” At one point, a doctor even ‘prescribed’ having a baby to Lily, despite a) there being no evidence that post-pregnancy her endometriosis symptoms wouldn’t return and b) it being totally inappropriate.
“I was 23, had no partner and lived at home,” Lily recalls. “I was financially unstable, never mind mentally and physically unstable because of the amount of pain I was in. I was like, ‘How do you think I'm getting pregnant when I'm in too much pain to ever have sex?’ and besides, I’ve got no money. All my wages are going to private health care. I can barely stand. How am I supposed to care for a child if I can't care for myself?’.”
Lily has posted about the burns on her stomach, as a result of overusing heat pads and hot water bottles in an attempt to find pain relief:
Once she came off the pill two years ago, Lily, who is now a legal assistant, says her pain instantly ramped back up – culminating in her writhing on the floor at work one day. “I wasn't even on my period, which is why it's annoying when people think it's just a ‘time of the month’ disease. For me, it's constant but gets worse when I bleed. I was ovulating on that day, and just typing away as normal, when I had this horrifically sharp pain all throughout my pelvis, up my back and down my legs. I had to go into a meeting room and a colleague came in saying, ‘I can literally hear your squeak of pain from outside, you need to get checked out’.”
Lily, who no longer gets paid for sick days as she’s had to take so many, did head to her doctor’s surgery that day – where, thankfully, this time she was seen by a GP whose mother had endometriosis. This doctor immediately recognised that Lily’s experience was ‘textbook endo’ and referred her to a gynaecologist. Sadly, Lily hit a brick wall during this next appointment. “She didn't let me finish a sentence, or properly explain that I have painful periods and ovulation, painful sex, awful bowel movements, back pain, leg pain, anything that you can think of. That it was stopping me doing my normal activities and I was having days off work. She just wasn't listening.”
That meeting prompted Lily (with the help of her parents) to seek out a BSGE-accredited endometriosis specialist instead – who had a £250 consulting fee. He was worth the money, she says, telling her “you don't have to fight anymore, I believe you” and quickly ordering tests. Since then, in total, Lily has spent more than £10,000 on private investigations and surgeries, one of which revealed she even has signs of endometriosis in her diaphragm, which can cause chest pain when she’s on her period. After speaking about her story online, one of Lily’s friends from the endometriosis community walked the equivalent of 10 marathons in her honour to help raise money for medical expenses.
During her darkest moments, Lily shares, she has even considered ending her life to escape the pain, but thankfully she had the support of her loved ones to help her through. “But I'm never going to be pain free, which is hard to come to terms with,” she reflects.
It’s clear that endometriosis is far from a ‘bad period’ or something that can be simply smoothed over with a hot water bottle and some painkillers – which, in Lily’s case, include morphine – which is why it’s so important we keep the conversation around it going, and continue calling on the government to invest more money into women’s health (at both a societal awareness and research level). “If your doctor is dismissing you or you aren’t getting the right care, you have every right to search for [or request] a new doctor,” reminds Dr Shirin Lakhani, a women’s health expert. “It is also completely within your right to ask for a specialist or a second opinion.”
Some small, positive changes are happening. For instance, further medications are being explored like a daily hormone-blocking pill that was recently approved for NHS use (although it’s far from a silver bullet and won’t be suitable for everyone). But for women like Emma, Hadia and Lily, breakthroughs and much-needed conversations are still happening at far too slow a pace.
Sharing vital information relating to female health is something we can all get behind, to at least help alleviate some of the mental stress and anguish that can accompany the physical symptoms of endometriosis – and to ensure as many women as possible are clued up while seeking a diagnosis in a world where far too often, their pain is heartbreakingly misunderstood or overlooked.
Connect with Emma, Hadia and Lily on social media
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