As the UK government prepares to launch an inquiry into women’s experiences of the condition, we speak to sufferers to find out how it impacts their lives
For many women, cramps, back pain, and sickness are part and parcel of their monthly cycle – a nuisance at best and a day in bed at worst. But for those suffering with endometriosis, a period can cause debilitating pain, leading to blackouts and an inability to continue with their everyday lives.
Although one in ten women suffer from the condition – which can lead to infertility – it receives little media attention, almost no funding for further research, and takes an average of seven and a half years to be diagnosed. While treatments range from everyday painkillers and the contraceptive pill to medical procedures and invasive surgery, there is no straightforward cure. One extreme way to combat endometriosis is to have a hysterectomy, something Lena Dunham chose to do at the age of 31 after suffering with the condition for a decade. “With pain like this, I will never be able to be anyone’s mother,” the writer and actress wrote of her decision in a personal essay for Vogue. “Even if I could get pregnant, there’s nothing I can offer.”
Following a BBC report yesterday which saw 13,500 women reveal the devastating effects of endometriosis, UK MPs have pledged to launch an inquiry into women’s experiences of the condition.
“Endometriosis can make everyday life more difficult,” sexual and reproductive health specialist at Treated, Dr Daniel Atkinson tells Dazed. “It can cause emotional distress and in severe cases contribute towards depression. This report has brought to light the devastating effects of endometriosis,” Atkinson continued, “and how women have been suffering for so long.”
To mark the monumental occasion, we spoke to eight women about what they think of the government’s action, how their lives have been affected by the illness, and what more needs to be done to educate people about it.
I can't even put into words the amount of emotions I'm feeling right now. It's coming up to 10 years since the first time I was hospitalized with #endometriosis and now we're finally seeing how many women are suffering yet are told their pains are normal 🎗💛🌻 https://t.co/IMD3Hjmpxv— Sarah🌺 (@Sarah_Niamh) October 7, 2019
ELEANOR THOM, 34
“For me it’s extremely painful much of the time; some days it’s hard to stand up, which is a problem as a comedian because that’s a big part of the job! It’s also meant a lot of surgery (nine and counting), trialling medications, and lifestyle changes.
I think (the government inquiry) is brilliant and not a moment too soon. What I learned while researching my book, Private Parts, is that awareness is key – with better awareness women and doctors will know what to look for and how to manage the symptoms. If as many people suffer from endometriosis as diabetes and arthritis, why aren’t we talking about it? Debilitating pain and other symptoms like extreme fatigue, painful sex, bowel issues are not normal, just ‘bad periods’, or ‘women’s problems’. Going forward I think it would be a huge help to teach menstrual health to all – boys and girls – from an early age so they know what signs to look for. Let’s smash the taboo around periods and women’s health and talk about this stuff.”
KEZIA LOCKE, 28
“Living with chronic pain is always debilitating and demoralising, but when you don’t know the source of the pain it makes it even more difficult to deal with. I really struggled with my mental health, centred around anxiety about potential problems with fertility. I was incredibly lucky that I was diagnosed and treated very quickly (after being privately referred by the NHS) which has made all the difference to me and the way I’ve been able to deal with having the condition.
Much more needs to be done to shed light on what women go through with endometriosis; so many people don’t know or understand what it is, and many women suffer for years without a proper diagnosis. Pain needs to be taken seriously and more research needs to be done around the condition to help sufferers and speed up diagnosis time. The BBC survey and government inquiry is giving the condition much-needed media attention, and hopefully this will raise more awareness and educate people about all the women who are suffering.”
HAYLEY SMITH, 30
“It took me five years to get a diagnosis, I was told it was bad period pain, stomach problems – I was misdiagnosed with IBS – and was often told to get a hysterectomy. I hope that the new government inquiry will eliminate misunderstandings around endometriosis and provide doctors with the right information to take it seriously. For me, periods are agonising and I’m usually bedridden for a few days which has affected jobs and my social life – I’m constantly anxious when I leave the house as I never know when I’m going to have a flare up. I started having symptoms in my early 20s and it was horrific; I had no information so just assumed that all periods were this bad. I’ve done my own research and changed my lifestyle and diet to manage my symptoms, but what works for me may not work for others. Endometriosis needs to be treated on a case-by-case basis, and care needs to go beyond diagnosis – understanding this can prevent years of trauma, stress, frustration, and pain.”
“Care needs to go beyond diagnosis – understanding this can prevent years of trauma, stress, frustration, and pain” – Hayley Smith
CLAIRE DUNFORD, 33
“For the last 20 years, (getting my period) has meant excruciating, often debilitating pain, and monthly rectal bleeding. It’s been a battle to get doctors to sit up and understand what I’ve been experiencing: fainting from pain is not normal, being totally exhausted is not normal, constantly popping strong painkillers is not normal. I have vivid memories of being curled up on the toilet floor at work, being violently sick and nearly blacking out from pain, but when the drugs kicked in, I picked myself back up and returned to my day – my colleagues never knew. After battling for nearly 17 years, I was finally diagnosed with endometriosis in 2014.
Doctors are very uneducated about the condition and its treatment – imagine being in your 20s and the specialist you were fighting so hard to see suggests the only thing they can do for you is a full hysterectomy. I’ve felt embarrassed to talk about my experience and have made excuses instead of going into real details, but I’ve realised now that’s part of the problem. Very few people have heard of endo, although one in ten women suffer from it, so I welcome (the government inquiry) completely.”
MICHELLE KAMBASHA, 27
“By the time I was 12, my period was defined by insurmountable back pain, cramping that would cause me to pass out, and an inability to eat. There are so many days I remember passing out in school toilets and not emerging from them for an hour. It was at its worst when I was 15 to 26, and it was such a huge source of shame and embarrassment that even I struggled to take my pain seriously.
There isn’t enough support for women who suffer like this. I’ve (tried four different) contraceptive pills, some of which were a huge detriment to my mental health. Out of desperation I’d use my mother’s prescription-strength medication – I always took them in moderation, but I can see that due to the lack of help some people will be driven to finding their own therapies. 18 years on from the date of my first period and I’ve finally found some relief, but I had to be incredibly pro-active and had little to no help from a GP.”
HOLLY WARN, 21
“A common flare up for me can be characterised by a stomach that resembles a beach ball, an irritable mood, and severe paranoia. Living in a body that I have no control over makes leaving the house some days really challenging. After a slow and very reluctant diagnosis process, and being told at the age of 15 that the likelihood of me being able to have children is slim to none, (comments suggesting I look pregnant during a flare up) really get to me. When I tell people about my condition, 99 per cent of the time I’m met with a blank expression. This disease is a silent one – so often hidden beneath baggy clothes and a fake smile.
When I started my period aged 11 or 12 I didn’t mention (the pain) to my friends or family because I was embarrassed. I would feel sick with anxiety the week before my period was due because I was so worried about the pain I was going to have to face. When I told the doctors, I wasn’t taken seriously whatsoever and was made to feel as if I was crazy. Throughout my diagnosis I constantly felt like it was me against the doctors; my mum and I had to fight to be listened to and taken seriously. I felt alone and became very depressed and isolated. Changes to education and referral, and testing policies could have such a huge impact on people’s daily lives – physically and mentally.”
“Living in a body that I have no control over makes leaving the house some days really challenging” – Holly Warn
AIMEE HUTCHINSON, 28
“Endometriosis affects my life in so many ways: work, education, relationships, and even the clothes I wear. It has affected my confidence and mental health, curtailed my creativity, and ultimately affected how people see me as a person. Constantly being in pain can come across as attention-seeking, while the unpredictability of the condition makes you seem unreliable. I’m so happy that something is being done – seeing endometriosis on the main news segment today has made me incredibly emotional – I just wish it had been done sooner.
As a medical artist and illustrator, I’ve been conducting a personal project illustrating all aspects of endometriosis, and I aim to transfer this into leaflets that will hopefully one day be available in GP surgeries and hospital departments. We need better resources from the NHS for this condition, and more education in schools – young women need to know that (extreme) period pain isn’t normal and shouldn’t be stigmatised.”
KAREN HAVELIN, 38
“Endo affects my life in almost every way. I’ve had several surgeries but most days I still have varying degrees of pain and often feel nauseated. I spend a lot of energy trying to figure out what’s ‘regular’ pain and what needs more urgent attention, and worry a lot about my future and what treatments are available. It’s really important to start reaching people when they’re young; the years of undiscovered endometriosis that are so harmful, not only because the disease is allowed to develop unimpeded, but also because years of solitary suffering could be prevented. More conversations of this kind help in making people less ashamed to talk about bodies, periods, and pain. Young women need to be taken seriously when they report their pain.”