Coping with a Delayed Diagnosis
Reviewed by: HU Medical Review Board | Last reviewed: June 2018 | Last updated: January 2021
Diagnosing endometriosis can be challenging, as endometriosis can present in many ways and at various points throughout a woman's life. Additionally, some women may have the condition but experience few to no symptoms, while others may experience debilitating issues related to their endometriosis. Further, endometriosis shares similar symptoms with many other conditions ranging from urinary tract infections to inflammatory bowel disease, and many more in between, which can prolong the diagnostic process as potential conditions are narrowed down, or can lead to a misdiagnosis. Overall, receiving a diagnosis of endometriosis can take quite some time, with many receiving a diagnosis five to ten years after the onset of symptoms.1
A delayed endometriosis diagnosis can be alarming
Experiencing a delay in diagnosis can be a scary and frustrating process, as a woman is experiencing sometimes debilitating and life-altering symptoms with no explanation. The lack of ability to utilize appropriate treatment options can leave her in pain, discomfort, or lead to further damage as her condition progresses unchecked. It also may be hard to gain the understanding and support of family and friends when battling a condition with no name or apparent cause. This period of delayed diagnosis can be isolating and confusing.
Receiving a misdiagnosis, although it does put a potential name to what's going on, can be equally frustrating and concerning. For example, if a woman with endometriosis is misdiagnosed as having IBS (irritable bowel syndrome), she may start treatment for IBS and experience no relief or even experience a worsening of original symptoms as her endometriosis continues to progress unaddressed. Additionally, some potentially misdiagnosed conditions may have their own life-changing, long-term outcomes. Although endometriosis has its own set of long-term complications, diagnosing a woman with a condition she doesn't have, which may also change her entire life, could lead to unnecessary anxiety and fear.
What can be done?
Although delayed diagnosis and misdiagnosis of endometriosis are common, and sometimes unavoidable, there are several steps you or a loved one may be able to take to help ease the diagnostic process. Some of these are outlined below.
Keep a symptom diary
Keeping a detailed symptom diary and bringing it with you to your healthcare appointments may be critical in making a correct and swift diagnosis. Small details such as when exactly pain occurs, what, if any, foods or medications impact your symptoms, and other information may help your provider notice trends and rule out other similarly presenting conditions.
Understand your past medical history
Thoroughly understanding and being able to report any other conditions you may have, what medications you are taking or have taken in the recent past, any procedures, including surgeries, that you may have had, and your family medical history may all help point your provider in the direction of endometriosis. For example, if you know that your mother and sister both have endometriosis, it may help encourage investigation this direction as endometriosis is thought to potentially have a hereditary component.2 Also, if you have previously been on hormone-altering medications, such as birth control, and noticed that your symptoms responded well to that and worsened after you stopped those medications, it may be an indicator that endometriosis (a hormone-dependent condition) may be the cause of what's going on.3
Be ready to talk about the tough stuff
Since endometriosis is a condition related to the female reproductive system, and symptoms, such as pain during sex or during your period, are potential indicators of the condition, it will be necessary to talk about these things with your provider. Talking about the menstrual cycle or sexual health may be uncomfortable for some women, and this is understandable. These are private topics that we may not share with anyone, besides an intimate partner. However, it's important to remember that in order to receive the right diagnosis, you'll need to be honest and open with your provider. If your provider makes you feel uncomfortable or you aren't comfortable talking with them about these topics, it may be a good idea to try to find a new provider who makes you feel at ease.
Educate yourself and find support
Taking the time to inform yourself on the potential conditions that could be related to the symptoms you're having may lead you to notice more specific symptoms or ask focused questions when visiting your healthcare provider. Although the internet can be overwhelming and filled with so much information that may be less than accurate, it is possible to find basic overviews on conditions from reputable online sources. Some online support groups, like ours, will have this kind of information and will be reviewed by medical professionals. In addition to being a place to find critical information, support groups (online or in-person) may be a great place to share your experiences and build up your confidence to be a strong self-advocate. Bouncing symptoms and thoughts off of others in a similar situation may lead to self-discovery and ideas on how to best approach your situation.