BBCFor women living with endometriosis, debilitating pain, fatigue and heavy periods can make it feel almost impossible to sustain a career or social life.
The only way formally to diagnose endometriosis is through invasive surgery, but getting to that stage can take on average eight to 10 years, from a patient’s first GP appointment.
For women like Dee Montague-Coast, 41, the lack of evidence of disease during the diagnostic delay can lead to people not believing they are unwell, and even force them to change careers.
Now an evidence-based “symptom reporting tool” has been developed by Cardiff academics aimed at highlighting patterns that will raise healthcare providers’ attention.
Dee, from Newport, was diagnosed with endometriosis in 2018 after 23 years of symptoms.
She left a job in marketing after questions were raised by former colleagues over whether her symptoms were fabricated for extra time off.
“When it’s gynae [gynaecology] related, there’s common assumptions that this is something all women and people assigned female at birth go through and that we should get on with it,” she said.
“I’ve had people think that I’m attention-seeking, that I’m making things up, that I’m just maybe a bit weak or a bit pathetic.”
Time away from work to manage her chronic pain led to Dee having to attend an attendance hearing.
“I felt that I was treated in the same way as somebody who was perfectly healthy,” she said.
Dee also suffers with adenomyosis – where the lining of the womb starts growing into the muscle in the wall of the womb – and said her diagnostic delay caused further health issues.
These included myalgic encephalomyelitis or ME, which is also called chronic fatigue syndrome, and fibromyalgia.
What is endometriosis?
Endometriosis is a gynaecological condition associated with menstruation where tissue similar to the lining of the womb is found in other areas of the body, including the fallopian tubes, pelvis, bowel, vagina and intestines.
In rare cases it has even been found in the lungs, eyes, spine and brain.
Symptoms include severe to debilitating pain often in the pelvic area, fatigue, and heavy periods, and the condition is also associated with infertility.
There is no cure for endometriosis, and the cause is not known.
A collaboration between academics and healthcare professionals in Cardiff has now developed a symptom reporting tool for Endometriosis Cymru.
Dr Robyn Jackowich, a lecturer in psychology at Cardiff University, who led the development of the tool, said it could be used to “track five key symptoms of endometriosis daily, where a patient will rate the level of pain intensity of each symptom and the impact that it is having on their life”.
“We recommend doing that for about two months.
“From there, you can generate a brief report that summarises the information and graphs your symptoms, so you can share it with your healthcare provider or employer.”
Dr Jackowich said the tool could also be used by women like Dee who have received their diagnosis, but want to continue tracking their symptoms over time.
“Perhaps something has changed, or they’ve started a new treatment,” she said.
Surgery can only remove or destroy some endometriosis tissue, so women were often left managing symptoms until they improved after menopause.
In November, Dee gave evidence at the Senedd’s Disability and Employment Inquiry, which aimed to evaluate what more could be done to reduce and remove barriers to employment faced by disabled people.
“When we started exploring reasonable adjustments, I didn’t understand that I was disabled under the Equality Act, or know I was allowed to call myself disabled,” Dee said.
“We have such a narrow view of what disability is, and what it looks like.”
A Social Model of Disability was formally adopted by the Welsh government in 2002, but Dee said there were “still too many employers who don’t know about it.”
Endometriosis as a chronic condition doesn’t automatically qualify as a disability under equality law – but, a person living with endometriosis can be disabled by their condition – and the law accepts this.
Endometriosis symptoms that worsen over time as a ‘progressive condition’ are also covered by the Equality Act 2010.
Karen Hiu Ching Lo, vice-chair of Fair Treatment for the Women of Wales (FTWW), also has endometriosis and often missed lectures as a medical student in Cardiff, due to multiple debilitating symptoms.
She said the symptoms such as intense pain, bowel and bladder issues, and low mood can often lead to confusion at the point of referral, and ultimately delayed their diagnosis.
“What we’re trying to do is make people realise that this could be all one condition, and that all you needed was that one referral to the right person.
“When we speak to medical health professionals a lot of our experiences could feel invalidated. We want this tool to be able to empower patients, and also be able to guide GPs.”
Dee now works with FTWW, using her experience to support members using the tool.
She said if it had existed at the time of her diagnosis, it could have saved more than two decades of agony.
“It would have accelerated my diagnosis and treatment,” Dee said.
“I didn’t necessarily have classic endometriosis symptoms, and that is very, very challenging to explain to an employer.”
A spokesperson for Cardiff and Vale University Health Board said: “We are aware of the impact delays in diagnostics for women’s health conditions can have on patients and as part of the joint endometriosis action plan we are committed to supporting patients to access evidence-based support in a timely manner.”
A Welsh government spokesperson said: “The symptom reporting tool enables women to track their symptoms and communicate easily with professionals, thereby improving experiences for both patients and healthcare professionals.
