By Imogen Robinson
For a condition that most women — even those who have it — may not have even heard the name of several years ago, it is laudable that endometriosis is now receiving more attention, particularly from the media. Other issues too, continually swept under the rug for decades, are actually being taken seriously; a prime example being the vaginal mesh scandal. Finally, several articles in national publications later, it is as if the world is waking up to the fact that women aren’t making up their pain.
Endometriosis, for those that are still none the wiser, is a condition whereby the same cells that make up the womb lining start to grow in other places in the body, including the bowel and ovaries. There, they still act like the cells lining the womb; they build up each month and subsequently shed as a ‘period’. The difference is that this shedding has nowhere to go so simply remains inside the body, on and around the organs, as scar tissue. The condition can result in infertility. There is no cure.
The symptoms of the condition are now well-documented. Chronic pain, fatigue, heavy periods, depression, bowel problems, to name but a few. Yet the thing that is so shocking is that many of its symptoms are serious medical conditions in themselves. Depression, for one, isn’t only a symptom — it’s a potentially fatal illness.
“Women with endometriosis are at risk of developing anxiety or depression caused by the symptoms of the disease, but also because of the length of time until the diagnosis is established,” says Dr. Pandelis Athanasias, a gynaecologist at the London Women’s Centre. “Studies revealed that it takes more than seven years and multiple visits to your doctor to reach the diagnosis of endometriosis. In 2017 endometriosis is still being dismissed by many clinicians as merely ‘women’s problems’.”
“As such,” Dr. Pandelis continues, “many women feel exhausted from not being listened to or believed whilst also dealing with debilitating pain that affects every aspect of their daily activities. In addition, sex is painful and trying to conceive naturally can be an issue. The symptoms can lead to frustration, sadness, anger and fear.”
Seeing friends having their lives put on hold because of endometriosis and having to deal with the mental repercussions of this, is heartbreaking in itself. But what is it actually like for the women who have to live it?
“From a young age my pain and symptoms have stopped me from fully experiencing the life of others my age,” says Ellie*, a 26-year-old emergency medical dispatcher for the ambulance service. “I still live at home, I’m only able to work part-time and I have had to put my studying towards my degree on hold because I am not mentally or physically capable and what little I do is a struggle.”
Ellie’s story from the first appearance of symptoms to her eventual diagnosis is horrifying — and horrifyingly typical. She suffered painful periods pretty much from when she first started menstruating at about the age of 13 and was always told that that’s just the way it is. Over the years her symptoms progressed considerably. “The things I used to take for granted I now struggle with,” she says. “This is, unfortunately, something I don’t think people appreciate as it isn’t an illness they can see.”
As well as chronic pain, Ellie also struggles with bowel issues and urinary problems. She has discomfort, pain, and bleeding during and after sex, sometimes even for days after. She has had several invasive procedures and several misdiagnoses, and is now on a 14-month waiting list for a laparoscopy to confirm a diagnosis of endometriosis. “So basically, to sum it up, I’ve been suffering from my symptoms for 13 years, and they have escalated considerably in the last three years,” she says.
Sarah, a 28-year-old SEN officer, was finally diagnosed with endometriosis aged 24, having suffered with her periods since they started when she was nine. “I was told that periods weren’t supposed to be pleasant, and that it was just my body and I would have to accept it,” she says. She was diagnosed with depression and anxiety officially at the age of 23 and says her mental health issues were undeniably caused by her endometriosis.
“My endo prompted low mood as I had pain at varying levels in my back and abdomen, numbness in my legs, and overwhelming nausea and vomiting which affected my sleep,” she says. “The primary factor for the endo causing depression was the increased risk of infertility. I’ve wanted to be a mother for as long as I can remember and I remember the feeling when I was told what endometriosis was, and the uncertainty in not knowing if I could ever have children.”
Errin, a 35-year-old former nursing aide who is currently out of work on disability, also believes her mental health issues are caused in part by her endometriosis. She was diagnosed with endometriosis in 2015 “after 20 years of trying to make doctors listen to my concerns that my uterus was not normal”. “From my very first period I was in physical as well as emotional distress,” she says. She has now been diagnosed with major depression, borderline personality disorder, PTSD and anxiety.
Ellie, too, believes her depression was brought about by her endometriosis. Her mental health issues started around the age of 13 or 14, and it was at that point she began self-harming in secret, a secret she kept until last year when she made an attempt to take her own life. She has been on medication for anxiety since her early twenties when her bowel symptoms became more prevalent, as she always had to make sure she was near a bathroom.
“My depression, I believe, stems from a multitude of reasons, endometriosis and the abuse I have suffered being the two main contributing factors,” she says. “It is hard to cope with being in pain on such a regular basis and having doubts over your fertility and self-worth as a woman.” On top of that, as she experiences pain during and after intercourse, it makes her feel as though she isn’t sexy. “My anxiety is high with a sexual partner as I don’t know whether I will be able to be intimate with them and how they might react if I can’t,” she adds.
These examples aren’t anomalies, but rather the norm. A call for people to come forward with their stories yielded an overwhelming amount of responses. Given that the average waiting period to be diagnosed with endometriosis is 7.5 years, and it is a condition that still doesn’t seem to be on the radar of many health professionals, it’s terrible, but unsurprising, that mental healthcare with regards to the disease is lacking.
Indeed, a recent Guardian article spoke of a study during which clinicians were asked how they perceived their patients’ need for psychological support, and quoted one gynaecologist as saying “Do mad people get endo or does endo make you mad? It’s probably a bit of both”. It seems the Victorian-era days of women being brushed off with hysteria are still with us after all.
“No one offered me the mental health support I needed until it was too late and I attempted to take my own life,” says Errin. She begged for referrals to the anxiety specialists. She even called the anxiety centre herself as she felt she couldn’t keep going for much longer, given the pain she was in. Ellie, too, struggled to get help for her mental health, and felt she had trouble getting people to take her seriously. “I didn’t receive support from the team of doctors supporting me for my endo,” she says. “Despite crying to them about struggling to cope and being in constant daily pain, not once was it ever mentioned that I should seek support for the mental effects this had.”
Sarah had a slightly more positive experience when it came to support, although even then her mental health support was limited to the help she received from her GP. “My GP was fantastic,” she says. “He was really open and supportive in how I was feeling and explained what options I had for the future. However, I don’t think there was any awareness that the depression was related to my endo by anyone except myself and my GP.”
So what is the solution? Sarah feels strongly that awareness of what endometriosis is, among the public and doctors, would help. “Knowing what it is and actually not branding it simply as ‘heavy/bad/sore periods’ would be a great first step to raising awareness to just how debilitating the condition is, physically and mentally.”
Dr. Pandelis emphasises that patients who are having mental issues as a result of, or alongside, their endometriosis should talk to their doctor if they feel able, who will then refer you to a psychologist or a counsellor.
“Endometriosis is an evolving chronic condition of the reproductive years and although doctors are trained to recognise mental health issues caused by the disease, there are no established pathways to streamline the referrals to the appropriate professionals,” he says. “I need to emphasise the significance of recognising psychiatric symptoms in patients with endometriosis. They can have a great impact on the woman’s quality of life and also on the disease progression.”
*Not her real name