March is Endometriosis Awareness Month. Endometriosis is a very painful condition when the tissue similar to the lining of the uterus grows in places where it does not belong. Endometriosis is not rare and affects about ten percent of people with a uterus worldwide, but it is often misunderstood in the medical community as just a bad period. Women are suffering on average for seven to ten years before receiving an accurate endometriosis diagnosis. When we finally get treatment for endometriosis, often the disease has progressed, and major damage has been done that cannot be reversed. Early diagnosis is so important for endometriosis because the sooner the disease is treated, the less likely it is to affect your fertility and cause damage to major organs. Endometriosis can be very serious, but it is often not taken seriously by doctors, and delayed diagnosis is hurting people affected by it. If endometriosis can cause serious damage, then why does it take ten years to get treatment? In this post, I am sharing a few reasons why it takes so long to get a diagnosis.
It is not always seen on imaging– Endometriosis can sometimes be seen on imaging, but it can be missed if the test is not done by someone trained to recognize endometriosis or read by someone trained to recognize all the different ways endometriosis can present itself. It can be easily missed on ultrasounds because endometriosis shows up in different colors on tests, and sometimes lesions are clear, and you can easily miss them. In the past, you weren’t able to diagnose endometriosis without surgery, but because of medical advancements, now you can diagnose endometriosis through imaging, and that is how mine was diagnosed. Laparoscopic surgery is sometimes still recommended because it’s the only way to be absolutely certain it’s endometriosis, but not everyone is a candidate for surgery. Sometimes it may look like endometriosis on scans and be something else.
It doesn’t always cause pain– Some women suspect they have endometriosis because it can cause crippling chronic pain, and I had a hunch I might have it months before I was diagnosed. Endometriosis can significantly impact your quality of life for some people, but not everyone with endometriosis experiences crippling chronic pain, and only some people do. Some people with endometriosis do not experience any pain and don’t know they have it until they try to get pregnant and aren’t able to. People who are experiencing symptoms often will go to the doctor to get answers, but if you aren’t having pain, there is no reason to go to the doctor, which can delay diagnosis. I experience chronic pain because of endometriosis, but not everyone has pain like I do because it can be completely invisible.
It is often dismissed as a bad period- Most people have heard about endometriosis, but not all doctors understand it and think it’s just a period. Women are sometimes dismissed by many doctors and told that period pain is normal, and all women get cramps. It is true that all women get period cramps, but not all women get unbearable period cramps that prevent them from living life because that is not normal. Endometriosis can affect you when you aren’t on your period, and it can be difficult to find a doctor who doesn’t dismiss your pain and understands that it’s not just bad period cramps. Excision is the gold standard for endometriosis, not ablation, but it can be hard to find a doctor who does that because most good excision surgeons often are not covered by insurance, and there is a shortage of specialists. It can be hard to explain to doctors that your period pain is not normal, and patients not being believed is what delays diagnosis.
It can overlap with other conditions- Endometriosis can be tricky to diagnose because, despite what most people believe, bad period cramps are not the only symptom. Symptoms of endometriosis can overlap with other conditions and sometimes can be misdiagnosed as IBS or UTI, because it is not uncommon for it to affect your bladder or bowel function, and it’s more common to affect that area than any other part of your body. Most people with endometriosis have bladder and bowel symptoms because it can make it more difficult to go to the bathroom, but not everyone experiencing bladder and bowel symptoms has bladder or bowel endometriosis. If you are experiencing constipation and bladder urgency, doctors often don’t think it could be endometriosis, causing these issues, and it often gets misdiagnosed as something else, which delays diagnosis. It can be tricky to diagnose endometriosis because it can overlap with other health conditions, which is why it’s so important to be evaluated by a specialist, because not all bladder and bowel problems are endometriosis.
It is overlooked in teenagers- Endometriosis can affect anyone with a uterus, but it is often overlooked in teenagers because some doctors think kids are too young to have endometriosis and think they are just complaining to get out of school. Teenagers are not too young to have endometriosis, because it can affect anyone at any age, and a lot of the time it starts in your teenage years when you get your first period. Teenagers deserve to be heard, but they are more likely to get overlooked in teenagers because people sometimes think endometriosis is something only adults experience. Early diagnosis is so important for better outcomes, and we need to stop dismissing pain in kids because you are not too young to have endometriosis I have had more painful periods my whole life and think that my problems started when I was a child, and I didn’t realize that my pain wasn’t normal until I was older because I thought severe period cramps was something every woman went through.
Most doctors don’t get enough training- Endometriosis can affect any part of your period because, despite what people believe, it’s not a gynecological condition. Gynecologists usually are the ones who diagnose endometriosis, but sometimes other specialists have to be involved for its management because it can affect other areas of your body, such as your bladder, bowel, and in rare instances, your lungs. Endometriosis can sometimes be missed by doctors because most doctors don’t get enough education on endometriosis, and it can be easily missed by an untrained eye. I don’t think that all doctors need to be endometriosis experts, but diagnoses would be quicker if more doctors got education on it.
Endometriosis is a common disease that often takes years to get diagnosed because not everyone is trained to recognize it. Awareness is so important because no one should be suffering from severe chronic pain for decades. Patients need faster diagnoses for better health outcomes, because delayed diagnosis is harming patients. Most doctors prescribe birth control or pain medication, which can help improve pain, but it does not stop the progression, and some people do not get any relief from it. Endometriosis is a hard condition to live with because there is no cure, and you spend your entire life trying to manage symptoms, but sometimes the hardest part isn’t the pain itself, but it’s finding a doctor who believes. There are a lot of reasons why endometriosis goes undiagnosed for years, and the main reason is that doctors don’t get enough education on it. Why do you think that it takes so long to get diagnosed with endometriosis? If you liked this post, please leave a comment below and share it with your friends.
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