Woman who suffered for years says her symptoms cost her her job

For women living with endometriosis, debilitating pain, fatigue, and heavy periods can make it nearly impossible to maintain a career or social life.

The only formal way to diagnose endometriosis is through invasive surgery, but getting to this stage can take on average eight to ten years from the first appointment with a GP.

For women like Dee Montague-Coast, 41, the absence of signs of illness during the diagnosis window can lead people to believe they are unwell, and even force them to change careers.

Now an evidence-based ‘symptom reporting tool’ has been developed by Cardiff academics, aiming to highlight trends that will attract the attention of healthcare providers.

Dee, from Newport, was diagnosed with endometriosis in 2018 after 23 years of symptoms.

She left a job in marketing after former colleagues asked if her symptoms were fabricated for extra time off.

“When it’s related to gynecology, there are common assumptions that this is something that all women and those assigned at birth experience and that we should go for it,” she said.

“People think I’m attention-seeking, that I’m making things up, that I’m maybe just a little weak or a little pathetic.”

Missing work to manage her chronic pain required Dee to attend an appearance hearing.

“I felt like I was being treated the same as someone who was perfectly healthy,” she said.

Dee also suffers from adenomyosis — where the lining of the uterus begins to grow into the muscle of the uterus wall — and said her delayed diagnosis caused other health problems.

These included myalgic encephalomyelitis or ME, also called chronic fatigue syndrome, and fibromyalgia.

Endometriosis is a gynecological condition associated with menstruation in which tissue similar to the lining of the uterus is found in other areas of the body, including the fallopian tubes, pelvis, intestine, vagina, and intestines.

In rare cases, it has even been detected in the lungs, eyes, spine and brain.

Symptoms include severe to debilitating pain, often in the pelvic area, fatigue and heavy periods, and this 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 an endometriosis symptom reporting tool Cymru.

Dr Robyn Jackowich, senior 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 would rate the pain intensity level of each symptom and the intensity of the pain. the impact it has on their lives.

“We recommend doing this for about two months.

“From there, you can generate a brief report that summarizes the information and graphically represents your symptoms, so you can share it with your doctor 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.

“Maybe something changed, or they started a new treatment,” she said.

Surgery can only remove or destroy some of the endometriosis tissue, so women often had to manage their symptoms until they improved after menopause.

In November, Dee gave evidence to the Senedd inquiry into disability and employment, which aimed to assess what more could be done to reduce and remove the 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, nor did I know that I had the right to call myself disabled,” Dee said .

“We have a very 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 is not automatically considered a disability under the Equality Act – but someone living with endometriosis may be disabled as a result of their condition – and the law accepts this .

Symptoms of endometriosis that worsen over time as a “progressive disease” are also covered by the Equality Act 2010.

Karen Hiu Ching Lo, vice-president of Fair Treatment for the Women of Wales (FTWW), also suffers from endometriosis and often missed classes when she was a medical student in Cardiff, due to multiple debilitating symptoms.

She said symptoms such as severe pain, bowel and bladder problems and low mood can often lead to confusion at referral and ultimately delay their diagnosis.

“What we’re trying to do is make people understand that it could all just be one condition and all you needed was to be referred to the right person.

“When we talk to healthcare professionals, many of our experiences can seem invalidated. We want this tool to be able to empower patients and also guide GPs.”

Dee now works with FTWW, using her experience to help members use the tool.

She said if it had existed at the time of her diagnosis, it could have spared her more than two decades of agony.

“It would have expedited my diagnosis and treatment,” Dee said.

“I didn’t necessarily have the classic symptoms of endometriosis, and that’s very, very difficult to explain to an employer.”

A spokesperson for Cardiff and Vale University Health Board said: “We are aware of the impact that delays in diagnosing women’s health conditions can have on patients and, as part of the joint action plan against endometriosis, we are committed to helping patients access evidence-based support. in a timely manner. »

A Welsh Government spokesperson said: “The symptom reporting tool allows women to track their symptoms and communicate easily with professionals, improving the experience for patients and healthcare professionals.