Crippling and debilitating cramps, nausea, fainting, leg and back pain, brain fog, severe and heavy bleeding, chronic fatigue, chronic pelvic pain, pain during sex, loss of appetite, weight loss, hair loss, depression, anxiety and infertility.
If you wince when reading that, it’s because you should: It’s uncomfortable. It’s also the reality for 1 in 10 women living with endometriosis in the UK.
Recent research published by Manchester Met psychologist, Dr Jasmine Hearn, has exposed the very real and alarming reality of endometriosis care in the UK.
Dr Hearn describes how the disease is caused by an abnormal presence and cyclical shedding of endometrial tissue outside of the uterus, which provokes inflammatory reactions, thus causing severe pain to the sufferer.
She said: “The complexity of the condition and common misinterpretation of symptoms can lead to misdiagnoses and diagnosis delays of between seven to 12 years from symptom onset.”
This means that most women are waiting, on average, around 10 years to receive help for this debilitating condition.”
But before they ever receive that diagnosis, they often need to fight to be seen and heard.
Beth Stevens is a Manchester resident who has suffered from endometriosis for more than 10 years. She often frequented A&E with her symptoms, only to be discharged with the feelings that she had over-exaggerated her symptoms.
Interestingly, she points out how the lack of a formal diagnosis for so many years actually exacerbated her experience. It left her confused and alienated, struggling to understand why she couldn’t just deal with her period like everyone else.
Her inability to endure what is simply considered part and parcel of being a woman- the stoic acceptance of period pain, caused extreme feelings of shame and weakness.
“One nurse even told me that I just needed to eat more green vegetables, which as a vegan, made up the majority of my diet.”
Beth was controlled by her illness, dealing with bursts of vomiting from stomach pains and a flow which flooded six sanitary towels in an hour.
In 2018, she went to a gynaecologist in Manchester who reportedly did not believe the severity of her symptoms. An infection was assumed to be the root cause and she was marched out the door with antibiotics.
“Doctors were quick to blame me for overstating the severity of my symptoms.”
A new job later that year meant that she was able to receive private healthcare insurance.
She maintained that having to go private is simply not an option for the vast majority of women who suspect they are suffering from endometriosis.
“I feel like generally speaking, nation[wide], and maybe even world-wide, there is a lack of investment in women’s reproductive and general healthcare. We are often dismissed.”
Beth claims that despite all of her GP and hospital visits, not a single medical professional detected or even mentioned endometriosis.
It took her ten years to finally get that diagnosis, despite being hospitalised twice in one year.
The idea that she now had a name for this affliction, and that she wasn’t just overexaggerating, was ‘overwhelming’. Something really was wrong with her body, and now she was essentially justified in saying so.
During Beth’s final private consultation, she was told that the likelihood of her ever-having children was minimal.
Beth Stevens suffers from a range of debilitating symptoms
This is another very little understood element of endometriosis, that it can in fact affect a woman’s fertility- especially if it goes untreated for so long.
Beth said she felt she hadn’t done anything wrong to impede her chances of becoming a mother, but the fact that she had suffered for more than a decade without a diagnosis meant that she was unable to do anything to prevent it.
Dr Hearn’s report characterises the experience of seeking help for endometriosis in the UK as one of dismissal and disempowerment, and Beth’s experience of seeking healthcare in Greater Manchester echoes the research.
Peter Gibson works with Endometriosis Awareness North, which is an Oldham based charity focused on improving research and conversation around endometriosis.
He said: “This disease is yet another health inequality.
“If this was a men’s issue, we’d be a lot further along in diagnostics, research and level of interest from decision makers.
“It’s a case of the people who need the most help get the least help.”
Peter is particularly passionate about the stigma attached to the gynaecological disease, and how this acts to restrict education around the topic. The idea that endometriosis is just a women’s problem, or that men don’t need to get involved is something he rejects.
He said: “I think we all just need to shout out a bit more about health inequalities.
“This is your sister; this could be your partner…[men] need to join with us and make a noise about it.”
Peter started the charity along with his colleague, Dr Anita Sharma, after hearing about one of her patient’s experiences with endometriosis. Courtney Ormrod, whose education was ‘put on hold’ for years due to her debilitating symptoms, now acts as their campaign ambassador and continues to help spread awareness of the disease.
For Peter, and other campaigners of endometriosis, there is a big fight ahead for increased funding, further research and increased conversation around the disease.
Research such as Dr Hearn’s signals a definite turn towards attempts to understand how endometriosis works, and how women suffer in silence with it each day.
However, Beth Steven’s story clearly indicates that we have a long way to go until this research is funnelled into productive methods of coping with the disease in everyday life. Only then will we see endometriosis sufferers able to flourish in their personal lives and careers.
You can support Peter’s work at https://endometriosisawarenessnorth.com/contact-us