When should I ask about endometriosis?

If you're experiencing irregularities with your period, such as extreme pain, your period lasting longer than seven days, your menstrual cycle being less than 27 days, heavy bleeding, etc., it's worth asking about endometriosis. It is important to raise these questions sooner rather than later because endometriosis diagnosis is often delayed anywhere from 6 to 11 years depending on the case.  

In a collaborative 1996 study , researchers investigated the length of time between the onset of pain symptoms and the surgical diagnosis of endometriosis in women from the UK and the USA. A total of 218 women with surgically confirmed disease, recruited through endometriosis self-help groups, completed a postal questionnaire. The mean +/- SD delay in diagnosis for women from the USA was 11.73 +/- 9.05 years, significantly higher than the equivalent delay of 7.96 +/- 7.92 years for women from the UK (P < 0.01). Unfortunately, despite the increase in endometriosis awareness, diagnosis delays of endometriosis have not improved much over the last 25 years as indicated by a more recent study done in the UK (July 2020).  Now, experts report a mean average diagnosis delay of 7 years, which is still far too long. As a patient, it may help if you ask about endometriosis as soon as you notice irregularities in symptoms to better your chances of being diagnosed in the earlier stages. However, and I cannot stress this enough, there are current inadequacies in endometriosis treatment completely outside of a patient’s control that shape this diagnostic delay. Endometriosis is either difficult to find, misdiagnosed as other conditions, or completely dismissed.  

Difficult to detect in early stages 

Endometriosis diagnoses are delayed in large part because of current medical technology’s inability to detect the condition in its early stages. Most notably, transvaginal scans can’t identify most endometriosis growths, particularly smaller lesions. These scans only appear to be able to capture images of endometriomas, a very specific type of cyst. In fact, endometriosis diagnosis usually requires surgery for detection and removal of growths. Because those endometriosis lesions are difficult to address before endometriomas form, the condition may progress under the radar until the endometriomas enter the picture, making both the pain experienced and the treatment options more extreme. 

Often misdiagnosed 

Endometriosis is often misdiagnosed as irritable bowel syndrome (IBS) since this condition also causes pelvic pain. To make matters more confusing, IBS symptoms, such as bloating, bouts of diarrhea, cramping, and constipation, can actually accompany endometriosis development. Because the symptoms of both conditions overlap, it complicates effectively diagnosing and treating one, the other, and sometimes both. In fact, some treatments for IBS, especially dietary recommendations, may inadvertently make endometriosis symptoms worse since the root problem isn’t being addressed. 

Pain minimized or dismissed 

Because of hegemonic masculinity in medicine and society at-large, even though women report pain of higher severity with longer durations and greater frequency than men, this is too often attributed to preconceived ideas of feminine weakness instead of the pain’s intensity. In fact, according to a fairly recent study, 91% of  the participating 2, 400 women with chronic pain believe that the healthcare system discriminates against female patients. Women are also more likely to be told that their pain is psychosomatic and to have the reports of their pain vetted against their physical appearance. In other words, if women look fine, whatever that means, then they must actually be fine. This belittles women’s reported and unreported pain experiences. Especially given that endometriosis impacts women internally and can develop without visible detection for long periods of time, this makes the condition and the pain it causes all the more likely to be dismissed. 

If you speak to a doctor who honors your experiences, keeping a symptom diary can be an important part of being appropriately diagnosed with endometriosis. If you want to advocate for your concerns and initiate an endometriosis conversation with a medical professional, it may help to bring someone you trust or to get second and third opinions if need be. In due time, as doctors are better able to identify proper warning signs of endometriosis development through comprehensive symptom analysis and commentary, the diagnosis delay will hopefully  be diminished as women’s voices are rightfully heard and respected. In essence, you should ask about endometriosis as soon as you can, especially if you are experiencing certain irregular period symptoms. It's better to ask and end up not having endometriosis than to not ask and give the condition the chance to progress.