Why does it take so long to diagnose endometriosis?
Endometriosis has certainly seeped more decisively into mainstream consciousness in the last few years. Celebrities such as Lena Dunham and Padma Lakshmi have publicly spoken about their experiences with the condition and advocated for awareness; women’s stories of pain, dismissal, and misdiagnosis have started appearing in The Guardian, The Atlantic, The BBC, and more.
Sadly, this press has not been enough to dissolve the stigma attached to reproductive health which affects women seeking help for endometriosis. It has not worked hard enough to improve the general lack of awareness of how endometriosis affects women.
On average, a woman will wait 7.5 years from the moment she begins to experience symptoms to the moment she’s diagnosed. She might feel anything from mild discomfort to excruciating pain; some women with endometriosis will exhibit no symptoms at all while others endure symptoms that have a crippling effect on their daily life.
Gemma started experiencing period pain when she first started menstruating at age 11. Her periods would come every two weeks and last for 10 days, and were heavy enough for her to need to change her sanitary pad every two hours. Estelle first noticed symptoms at age 13, but was told her symptoms were psychological and due to irritable bowel syndrome (IBS). After being put on anti-depressant and anxiety medication she finally saw a gynaecologist at age 18 who told her, without any proof, that she wouldn’t be able to have children.
Gemma was diagnosed at age 24 and Estelle at age 18. That’s 13 and 5 years elapsed respectively since the first appearance of symptoms.
Why does it take so long to identify this common disease that has such a profound impact on the quality of women’s lives?
For Dr. Helen Webberley, a GP with specialist qualifications in sexual health, the first step in identifying endometriosis is to determine whether the pain a woman is experiencing is a part of her natural cycle. The process of diagnosis is essentially one of trial and error, she explains.
“Is that cyclical pain just what her cycle does? Is there something else going on, for example could her contraception be causing bleeding in between periods? Then you have to exclude things like infections. Once you’ve gone through all that you can start thinking whether it’s endometriosis.”
Dr. Narendra Pisal, leading consultant gynaecologist at London Gynaecology, uses a similar process of elimination to pin down the cause of a woman’s symptoms. If a patient’s primary symptom was pain during sex, Dr. Pisal would first try to figure out of the pain was deep or superficial. “Then we would have to work out whether the pain is being felt in all positions, and how much it is affecting them. If it’s deep pain, felt deep inside the tummy, then we would think about endometriosis,” he says.
Symptoms of endometriosis are also commonly confused with those of infections, STDs, and IBS. For example, constipation or water infections that have gone undiagnosed can sometimes cause grumbling pelvic pain. A telltale sign of IBS to look out for is bloating, which, Dr. Webberley says, endometriosis shouldn’t cause.
Endometriosis must be diagnosed via laparoscopy, which is an invasive procedure where a thin, lighted tube is inserted into the belly via a small incision to check for tissue that behaves like the lining of the womb (endometrium) but is growing outside of the womb. Because there are operative risks involved, doctors are careful in deciding which patients to put forward for the procedure.
“You have to have general anaesthetic for a start, and there is a risk of hospital-applied infection. There is always the risk of perforation, bleeding, and damage to the tubes,” says Dr. Webberley. Like any medical procedure, a good doctor should have an open discussion with you about the risks, benefits, and problems associated with over-investigating when there isn’t necessarily an indication to do so.
Another hurdle in the diagnosis process can be that sometimes, endometriosis simply doesn’t show up in tests. “Imagine that endometriosis is like grass growing on a path. If you get rid of the grass growing on your path, it still has the potential to grow back,” explains Dr. Michael Dooley, consultant gynaecologist and spokesperson for the Royal College of Obstetricians and Gynaecologists.
Both laparoscopies and ultrasounds can miss spots of endometrium because at the time, they simply aren’t there. “You may then say, well, there’s no weed, but then there’s a big bit of rain, and the weeds grow back”, he says. Both Dr. Dooley and Dr. Webberley have treated patients who have been thought not to have endometriosis initially, but were diagnosed after another, later test.
Diagnosis can also be delayed due to expectations that periods are meant to be painful anyway, Dr. Pisal adds. Without a frame of reference, women may have nothing to compare their pain to, which can make it difficult to figure out if the pain from endometriosis is worse than general period-related pain. More open discussion about period pain could help both women and healthcare professionals to better gauge what a particular type of pain means.
It can also take a long time for a woman to be referred to a gynaecologist from their GP, who might treat pelvic and period pain as a normal event. This isn’t necessarily due to one particular factor: GPs have busy clinics and only ten minutes per patient, and may be wary of referring patients unnecessarily. Both women like Gemma and healthcare professionals have also spoken out about dismissal of women’s pain at primary care level.
Women and girls in the UK face a number of barriers in accessing the health care and information they need, not least of which is the stigma surrounding sexual and reproductive health. As well as having difficulty bringing up their sexual or reproductive health, a 2011 report from the Women’s Health & Equality Consortium found that women — particularly BAME and/or women experiencing poverty — reported being judged or receiving inappropriate responses from healthcare professionals. If women aren’t fully aware how to communicate or understand their symptoms, could any difficulties in describing their situation affect their access to care?
Dr. Webberley is firm that it is the doctor’s responsibility to get the information they need, rather than pointing to a lack of awareness or education in women as the problem. “That puts the blame on the woman and it should be the doctor’s job to tease the information out of their patients, however eloquent they are or the ease with which they talk about it,” she says. “Sometimes doctors don’t take the full, listening, caring history that they should.”
There are the countless tales of women approaching doctors and having their pain dismissed, based on assumptions that periods are just meant to be painful or perhaps historically rooted in sexist notions of women’s hysteria; that women are simply overestimating what they are going through.
Estelle felt that the only doctor that believed her was her GP, while Gemma was told that her pain was normal: it was just her body reacting to the pill, or what period pain was meant to feel like. Gemma has since lost an ovary and a Fallopian tube and her endometriosis has now reached her left kidney. Her lengthy ordeal brought on anxiety and depression that became so much that she attempted to commit suicide. Estelle has experienced uncontrollable emotion, anxiety, and psychosis after being heavily medicated for sleep issues brought on by endometriosis.
Stories like these throw the integrity of care into question by exposing the damage done to women’s lives. More attention to how symptoms are affecting quality of life and focusing on treating those symptoms can be a way to better support women, says Dr. Dooley.
“If you come along to me with period pain, it may be nothing but it may be more. It may be a normal presentation but for you, it’s affecting your life, it’s affecting your social life, it’s affecting your work, and you’re coming to see me because of it. Therefore we’ve got to manage it. And we’ve got to work out how far one will go in investigating it,” he says.
This can be done without necessarily making a diagnosis. “I don’t treat patients with endometriosis, I treat their symptoms. You treat the patients and don’t label them, you treat them as far as their symptoms.”
For Dr. Webberley, the key is really listening to patients, being conscientious in considering their history, and understanding the story they are telling you. Having an open discussion about the options for that patient — which may or may not involve confirming a diagnosis — allows doctor and patient to make the decision together, taking into account what the patient wants and what the doctor thinks is best.