A woman who has suffered from pain for years says her symptoms are costing her work.

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

The only way to officially diagnose endometriosis is through invasive surgery, but it takes on average 8 to 10 years from the patient's first GP visit to reach that stage.

For women like Dee Montague-Coast, 41, a late diagnosis can mean people are unable to believe they are sick because there is no evidence of the disease, and they may be forced to change jobs. There is sex.

Now, an evidence-based 'symptom reporting tool' has been developed by academics in Cardiff that aims to highlight patterns that will alert healthcare professionals.

Dee, who lives in Newport, was diagnosed with endometriosis in 2018 after suffering symptoms for 23 years.

She quit her job in marketing after former co-workers questioned whether her symptoms had been fabricated for extra time off.

“When it comes to gynecology, [gynaecology] “In this context, there is a common assumption that this is something that all women and those assigned female at birth experience and that we should get over this,” she said.

“I've had people think that I'm attention-seeking, that I'm making things up, that I'm a little weak, that I'm a little pathetic.”

Because she took time off from work to manage her chronic pain, Dee was required to attend a attendance hearing.

“I felt like I was being treated like a perfectly healthy person,” she said.

Dee is also suffering Adenomyosis It is where the endometrium begins to grow into the muscle of the uterine wall, and she said the delay in diagnosis caused further health problems.

These include: myalgic encephalomyelitis Also known as ME, chronic fatigue syndrome. fibromyalgia.

endometriosis It is a gynecological disease associated with menstruation, in which tissue similar to the endometrium is found in other areas of the body, such as the fallopian tubes, pelvis, intestines, vagina, and small intestine.

Rarely, it may also be found in the lungs, eyes, spine, and brain.

Symptoms include severe to debilitating pain, often in the pelvic region, fatigue, and menstrual cramps, and the condition is also associated with infertility.

There is no cure for endometriosis and the cause is unknown.

The endometriosis Cymru symptom reporting tool has been developed in collaboration with academics and medical professionals in Cardiff.

Dr Robin Jackowicz, a lecturer in psychology at Cardiff University who led the development of the tool, said it could be used to “track the five main symptoms of endometriosis on a daily basis”. Patients rated the level of pain intensity of each symptom and the impact it was having on their life.

“We recommend doing that for about two months.

“From there, you can create a simple report that summarizes the information and graphs your symptoms, which you can share with your healthcare provider or employer.”

Jackowicz said the tool could also be used by women like Dee who have been diagnosed but want to continue tracking their symptoms over time.

“Perhaps something has changed or a new treatment has started,” she says.

Because surgery can only remove or destroy some of the endometriotic tissue, women often had to manage their symptoms after menopause until their symptoms improved.

In November, Mr Dee gave evidence at the Senedd's Disability and Employment Inquiry, which aims to assess what more can be done to reduce and remove barriers to employment faced by disabled people.

“When I started looking for reasonable accommodations, I didn’t understand that I was disabled under the Equality Act. I also didn’t know that I was allowed to call myself disabled. “It was,” Dee said.

“We have a very narrow view of what disability is and what it looks like.”

Although the social model of disability was formally adopted by the Welsh Government in 2002, “too many employers still don't know about it”, Mr Dee said.

Although endometriosis as a chronic disease does not automatically qualify as a disability under the Equality Act, people living with endometriosis may be disabled by their condition. Yes, the law recognizes this.

The symptoms of endometriosis, which worsen over time as a 'progressive disease', are also covered by the Equality Act 2010.

Karen Hieu Ching Loh, vice-president of Fair Treatment for Women in Wales (FTWW), also has endometriosis and was unable to give lectures as a medical student in Cardiff due to multiple debilitating symptoms. I was often absent.

She said symptoms such as severe pain, bowel or bladder problems and low mood can often cause confusion at the point of referral and ultimately delay diagnosis.

“What we’re trying to do is help people understand that this can all be one condition and all it takes is one referral to the right person.

“When speaking to medical professionals, many of our experiences can feel invalidated. We want this tool to empower patients and guide GPs. ”

Dee currently works for FTWW and uses her experience to support members using the tool.

She said more than 20 years of suffering could have been avoided if the disease had been present when she was diagnosed.

“That would have speeded up diagnosis and treatment,” Dee said.

“I didn't necessarily have typical endometriosis symptoms, and it was very difficult to explain that to my employer.”

A Cardiff University and Vale University Health Board spokesperson said: “We are aware of the impact that delays in diagnosing women's health conditions have on patients and as part of the Endometriosis Joint Action Plan “We are committed to helping people access evidence-based support.” In a timely manner. ”

A Welsh Government spokesperson said: “Symptom reporting tools will enable women to track their symptoms and easily communicate with professionals, thereby improving the experience for both patients and health professionals.” .