It’s Time We Talk About Endometriosis

As this year’s Endometriosis Awareness Month comes to an end, Bella Caledonia has talked to some Scottish women affected by the condition. Despite affecting one in 10 women in the UK, endometriosis is still a lesser-known condition that can seriously impact people’s physical and mental health. 

Carrie-Mae Macmillan, from Old Kilpatrick in West Dunbartonshire, was only 16 when she first started experiencing a regular, excruciating lower abdominal pain. “It wasn’t the level of pain that I would feel more into puberty or right into my twenties but I did suffer terrible cramps,” she tells Bella Caledonia.

Her mum, who had experienced fibroids (non-cancerous growths that develop in or around the uterus) herself, decided it was time for her daughter to be seen by a doctor. Macmillan continues: “At that young age, experiencing bad cramps and going to the doctors means being told that ‘it’s just a period, it’s normal’.”

Turns out, however, that her pain was everything but ‘normal’. Coinciding with her monthly cycle, the cramps became increasingly more acute to the point that she couldn’t walk or move during her period. “There was an incident when I was at the supermarket with my ex husband where I just had to go and sit in the car because I physically couldn’t walk anymore,” she says.

It wasn’t until the age of 27, more than ten years after she first started experiencing symptoms, that Carrie-Mae was finally diagnosed with endometriosis. Her experience impacted her so much that she decided to share it and continue to raise awareness around the condition on her Facebook page. 

What is endometriosis? 

Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places of the body, such as the ovaries and fallopian tubes. According to the Royal College of Obstetricians and Gynaecologists, it is the second most common gynaecological condition in the UK. 

In women and people with female reproductive organs who have the condition, the so-called endometrial-like cells can grow on various abdominal organs: the bladder, the bowel, the ovaries, the kidneys. This can result in a variety of symptoms, which include abdominal and pelvic pain, period cramps, pain during or after sex, constipation, diarrhoea, and more. The symptoms and their severity can vary significantly depending on the individual, therefore, lacking one or more of the afore-mentioned symptoms doesn’t mean not having the condition.

At date, a cure has yet to be found to cure endometriosis. Despite it having a severe impact on thousands of women, little is known about the condition and patients go undiagnosed for years.

Neglected and dismissed

According to Endometriosis UK, one in 10 British women and people with female reproductive organs suffer from endometriosis. Despite the condition being widely spread, however, it takes years before patients get their diagnosis. 

Ashley Pollock, a 28-year-old woman from North Lanarkshire, had been suffering with severe pain from the age of 12 but its cause wasn’t identified until she was 19. “Doctors were quite dismissive when I was younger and, at a young age, you don’t really ask questions. I’ve had so many gynaecologists, many have been terrible.” She continues: “It was only when seeing maybe like my last two that they have actually sat down and listened to what I’m trying to say and how bad my pain is.”

Until recently, it would take an average of seven and a half years for people with female reproductive organs to receive a diagnosis. According to a 2020 report released by the All Party Parliamentary Group (APPG) on Endometriosis, not only has there been no improvement but the situation has slightly worsened. The current average time to be diagnosed has gone up to eight years. As notes Lucia Osborne-Crowley on Refinery29, “these statistics are much, much worse for Black women in the UK, who are half as likely to be diagnosed with endometriosis as white women.”

Long diagnosis times are, on the one hand, caused by the complex process behind it, which usually entails a laparoscopy – a surgical diagnostic procedure used to examine the organs inside the abdomen. As we mentioned above, however, little is known about the condition. This contributes to patients’ pain being dismissed, inappropriate solutions being suggested or fertility being prioritised over one’s well being.

In addition, a longer waiting time often translates to the condition developing and becoming more severe as years go by. Angela Donaldson*, a 32-year-old from Glasgow, experienced her first endometriosis symptoms when she was 17 but was finally diagnosed at 30. The endometrial-like cells had spread to various places, including her fallopian tubes, which she was warned might have had to be removed. “After the doctor finished the operation, she came to tell me that my endometriosis was unbelievable. It was one of the worst that she’d ever seen.”

The consequences of the long diagnosis and regular dismissal of endometriosis patients doesn’t have only physical consequences, but emotional too. The three women we interviewed lost a great deal of trust towards doctors. How can we blame them, when they spent years speaking up about their pain but with no response?

Angela added: “For a really long time, I didn’t go to the doctors. I don’t often fall ill and, my pain being constantly dismissed, I didn’t see the point. I just thought ‘Well, they wouldn’t do anything anyway.’” Hadn’t it been for fertility treatments, she tells us, she wouldn’t have looked for further treatment. “There’s only so much time you can take to go to the doctors and keep getting the same answer.”

This reality is reflected by the results of the afore-mentioned inquiry by the All Party Parliamentary Group (APPG) on Endometriosis. Forty-six percent of respondents found their GP(s) to be unhelpful, 32% found their gynaecologist(s) unhelpful and only 19% knew that they were seen in specialist centres.

In Scotland, three endometriosis specialist centres exist and were planned to provide specialist endometriosis coverage for the whole of Scotland. However, these are currently being commissioned as local services and for local capacity, and it has been difficult to get a referral if you live in a different health board area.

Leaving patients unheard and with chronic pain for years can impact them emotionally on the long term. In fact, struggling with mental health problems is actually common among endometriosis patients. One in five of them are found to also have a diagnosis of depression and almost a third live with anxiety.

What can be done?

Looking at the recommendations suggested by the APPG, four are the areas that need to see improvements:

• diagnosis time. The APPG is seeking a commitment from Governments in all four nations to reduce average diagnosis times with targets of 4 years or less by 2025, and a year or less by 2030.
• appropriate care. The report highlights the need for the implementation of the Guidelines and the corresponding NICE Quality Standards on Endometriosis (2018) and an intersectional approach which recognises the additional barriers faced by those from Black, Asian and minority ethnic communities.
• awareness. Most endometriosis patients are still not familiar with the condition or its name. If more people would be aware of endometriosis and its symptoms, it would make it easier for people affected by the condition to seek help.
• investment into research. As mentioned before, there is still no known cure for endometriosis. Although a new study is currently being conducted at Edinburgh, there is still so much we don’t know about the condition.  

If you think you might have endometriosis, contact your GP. You can find more information on the NHS website and support at Endometriosis UK. If you’re looking for a community, check out @endosilencescot on Instagram.

*not her real name