We have long known that there is a close link between endometriosis and mental health. Numerous previous studies have shown that anxiety and depression are more common among women living with endometriosis than among those without the condition. For a long time, however, we primarily viewed this as a consequence of the established, chronic condition itself: pain, fertility issues, treatments, surgeries, limitations in daily life, and a decline in quality of life can understandably place a significant psychological burden on a person.
However, a new nationwide study conducted in Denmark paints a much more interesting picture. According to the study, the increased burden on mental health It doesn't start with a diagnosis of endometriosis. The differences become apparent years before the disease is officially named.
A Human Reproduction In a study published in a journal, Josiasen and colleagues from the University of Aarhus found that a total of Data on 136,842 women between the ages of 15 and 55 were analyzed. Of these, 22,807 women received a first-time hospital diagnosis of endometriosis, and 114,035 control subjects of the same age who had not been diagnosed with endometriosis were selected to match them.
One of the major advantages of Denmark’s national health registries is that researchers can track various aspects of health care over a long period of time. In this study, as much as the period of ten years prior to the diagnosis of endometriosis and the period of ten years following it They were also able to analyze it. In other words, in some cases, they had twenty years' worth of data at their disposal.
The researchers sought to capture the mental burden caused by anxiety and depression in two ways. First, they examined how often women were prescribed antidepressants and anti-anxiety medications; second, they looked at how often they were admitted to psychiatric hospitals for anxiety or depression.
The result was quite clear: Women who were later diagnosed with endometriosis had already been using more antidepressants and anti-anxiety medications prior to their diagnosis and were more likely to have sought psychiatric care for anxiety or depression than members of the control group. And this difference persisted even after the diagnosis.
It is particularly interesting that the trends over time for the various indicators were not entirely consistent. The use of antidepressants among women with endometriosis remained consistently higher over the years. The use of anti-anxiety medications, on the other hand, increased dramatically in the period immediately preceding the diagnosis of endometriosis.
A temporal pattern also emerged with regard to psychiatric hospital admissions: their frequency It began to rise about five years before she was diagnosed with endometriosis.
This finding is particularly important because it sheds new light on the question of why anxiety and depression are so common among people living with endometriosis.
In fact, the research shows that does not follow...that endometriosis causes depression or anxiety—nor that psychological problems cause endometriosis. This is an observational study based on registry data, so it cannot prove a causal relationship. However, it does strongly suggest that the two conditions coincide well before an official gynecological diagnosis is made.
There are several possible explanations for this.
One of them is perhaps the most obvious: Of course, endometriosis doesn't start on the day someone finally receives their diagnosis. The diagnosis is often preceded by years of pain, menstrual problems, pelvic symptoms, digestive or urinary tract issues, repeated doctor visits, unsuccessful treatments, and uncertainty.
In other words, it is quite possible that what we see in the data as an increased psychological burden prior to diagnosis is, at least in part, actually the burden of years spent with an undiagnosed illness.
Living with pain for a long time is stressful in and of itself. But it’s even harder to live with pain when you don’t know what’s going on inside your body. Asking for help over and over again, going for tests, and possibly being told that everything is fine, even though the symptoms don’t go away. Living in uncertainty about what’s causing the pain, whether it will get worse, whether it will affect fertility, and when—if ever—you’ll get an explanation.
However, there is another possible explanation. It is conceivable that there is a link between endometriosis and certain psychiatric problems common biological mechanisms There are also other factors. Inflammatory processes, neuroendocrine abnormalities, or interactions between the immune and nervous systems may all play a role. It is therefore possible that certain biological processes simultaneously increase the likelihood of developing both endometriosis and certain mood or anxiety disorders.
However, the current research cannot determine which explanation is correct. In fact, it may well be that There is not just one explanation: The biology of the disease, chronic pain, long delays in diagnosis, and experiences within the healthcare system collectively shape mental health.
One of the study’s greatest strengths is precisely its size and long follow-up period. The researchers analyzed data from a national registry of more than 136,000 women; moreover, they did not merely examine the women’s condition after diagnosis, but were able to look back as far as a full decade. Thus, we did not receive a single snapshot of the mental health of those living with endometriosis, but we can also see that, How does this change over the years following the diagnosis?.
At the same time, it is important to note the study’s limitations. The study included only women who had received a hospital diagnosis of endometriosis. Those who were treated exclusively in primary care or at private gynecological clinics were not included in the endometriosis group.
Mental health was not measured using psychological questionnaires or in-person psychiatric evaluations either. The researchers used prescribed medications and psychiatric hospital admissions as indicators. This means that the results are likely to they do not cover the entire psychological burden. Many people living with anxiety or depression never receive inpatient psychiatric care, and not everyone is prescribed or fills a prescription for medication.
That is precisely why the study’s most important message is perhaps not that endometriosis is linked to depression or anxiety. We already knew that.
The truly important realization is that timing.
Signs of emotional distress may appear even before endometriosis has been diagnosed.
This has very important clinical implications. If someone keeps going to the doctor with pelvic pain, menstrual problems, or other symptoms suggestive of endometriosis, while becoming increasingly anxious, exhausted, or depressed, then we need to address both issues. Psychological support should not have to wait until a diagnosis of endometriosis is made.
But the reverse is just as important: the presence of anxiety or depression it does not make the physical symptoms any less “real”. We should not conclude that a woman living with chronic pelvic pain—even if she is anxious or depressed—has pain of psychological origin. On the contrary: this research warns that psychological distress may even be part of the history of a long-standing, as yet unrecognized physical illness.
Perhaps this is the strongest message of this study: The cost of a delayed diagnosis of endometriosis is not measured solely in years.
Those years can be marked by pain, uncertainty, and a search for answers—and, as this study analyzing data from more than 136,000 women shows, They can also entail years of an unknown psychological burden.
The next important question, therefore, is no longer simply whether endometriosis is linked to anxiety and depression. Rather, it is how much of this burden is linked to the biology of the disease itself, how much to the chronic symptoms, and how much to the fact that those affected have to wait years for a name to be given to what they are living with.
Source: https://pubmed.ncbi.nlm.nih.gov/42295201/
About me
Hi, I’m Nóra Árvai, a clinical health psychologist, health communication specialist, and PhD researcher in the field of medical foresight. I’ve been working with women living with chronic illnesses for over 16 years, particularly those affected by endometriosis and infertility. Through more than 28,000 consultation hours, I’ve learned one thing for sure: reliable knowledge, the right support, and a strong community can truly change lives.
Over the past few years, I have written 14 books and published thousands of articles, and I have made it my mission to present the latest scientific findings in an accessible way to women who want to take back control of their own health.
I currently live in New York so I can do research, but my heart still beats for my Hungarian patients.
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