Half of women with endometriosis are dissatisfied with medical support
Nearly half of women with endometriosis are dissatisfied with the medical support they receive, according to a new report.
The study,1 on women with confirmed endometriosis, looked at questionnaires from 498 women, and found that feeling adequately informed by the time of diagnosis, taking women’s mental health troubles seriously, and supporting women in handling their pain were three factors significantly associated with satisfaction.
Endometriosis is a debilitating disease. Symptoms range from extremely heavy periods, to chronic pain and fatigue. Mental health implications are common due to the nature of the condition, which can dramatically affect ones day-to-day life.
It is a chronic inflammatory condition dependent on oestrogen, and, put simply, involves the proliferation of cells lining the womb in other parts of the body, including the Fallopian tubes, ovaries, and even the bowel. This means that when the cells break down and shed each month as a period this blood has nowhere to go, and ends up building scar tissue in these regions of the body.
As of yet there is no cure, and we don’t know why some women have it. However, there are a lot of ways of managing the condition, and the pain that accompanies it.
“Women’s symptoms are not always taken seriously and are often normalized by doctors, or even by themselves”
Given that endometriosis affects up to 10% of women, it is remarkable that only 54% of people who have it are satisfied with the support they receive.
Or is it that remarkable, given how much we know about how seriously women’s reproductive complaints are taken?
The study, published in PLOS ONE, states itself that “women’s symptoms are not always taken seriously and are often normalized by doctors, or even by themselves”. For this reason, many women may have endometriosis for years before they receive a diagnosis. Women may believe its “just” period pain, or their doctors may try and assure them it’s “just” period pain.
In the UK, the diagnostic delay is eight years,2 by which point the endometriosis may have progressed to the point where surgery is needed to remove the scar tissue.
In fact, none of the methods of managing the condition are perfect, and many are often only effective in the short term. Surgery can have a positive effect on dyspareunia, pain and infertility as well as quality of life on a short-term basis, the study states. Yet, it adds, “in 10-55% of cases symptoms reoccur”.
The researchers continue: “As medication e.g. mostly hormonal treatment often does not succeed to reduce disease symptoms to a satisfactory degree, many women have to deal with chronic symptoms and consequently need medical support for a prolonged time.”
While this can challenge medical support resources, particularly under a strained NHS, this also makes adequate support extremely important. On top of this, patient satisfaction reduces complaints and the number of second opinions sought, which could, the study states, cut costs. Despite this, few studies have looked at patient satisfaction in endometriosis, and have not systematically looked for options for improvement.
More than 80% of women in the study rated pain management, fertility, and mental health support as a necessary part of medical counselling, and women were significantly more often satisfied with medical support if all of these issues were addressed at diagnosis or subsequently.
10% of women said there was a need for better education and information, and 8.4% requested an individual approach.
10% of women said there was a need for better education and information, and 8.4% requested an individual approach, including alternative treatment, and treatment for psychological issues.
7%, a small, but not at all insignificant amount, wanted doctors to take women and their pain more seriously. Taking mental troubles seriously and supporting women in handling their pain improved patient satisfaction with medical support.
Women with chronic pain were significantly more often dissatisfied with medical support, suggesting that women’s pain is not given proper attention by medical staff. Indeed, the experience of not being taken seriously was found to be a relevant issue in dissatisfied patients.
As the researchers state, “Psychological support can help to handle pain, which in reverse can be an additional cause for depressions. Therefore, pain therapy and mental health support should always be a priority in patient care.”
Worryingly, women expressed a need for more information in all sections of endometriosis education. The study states: “In agreement with a Dutch study, they had the impression that only part of the doctors are adequately trained in endometriosis. According to their reasoning, general practitioners only see a limited number of women with endometriosis and therefore have difficulties to interpret disease symptoms correctly.” Given the prevalence of the disease, this sentence is almost laughable.
It’s absolutely crucial that those with chronic pain conditions are given adequate support, especially with regards to their mental health.
We need to start taking women’s health conditions seriously, and ensuring that complaints to do with reproductive health are never brushed off as mere “period pain”. If someone deems their period pain bad enough to visit a doctor, chances are its pretty bad. If a woman thinks that bleeding heavily for 10 days a month and finding sex painful isn’t quite right, she’s probably right.
1. I. Lukas et al., ‘Satisfaction with medical support in women with endometriosis’, PLOS ONE, 2018, [accessed online], 9 December 2018