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Know why endometriosis stays undiagnosed for years

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At least 1 in every 10 women live with endometriosis. It is a chronic condition in which the cells that are normally present inside the uterus lining grow outside the uterus, somewhere around the uterus, near the ovaries, or intestine. Severe pain, excess bleeding, among other physically strenuous symptoms accompany this condition, impacting women’s quality in life. Despite these grave symptoms, the journey to correct diagnosis can take anywhere between 4 to 11 years. Some studies indicate the average time period of diagnosis could be seven and half years.

Health Shots reached out to Dr Vaishali Sharma, MD (AIIMS) DSAGE (Germany), Senior Gynecologist, Laparoscopic Surgeon, and infertility specialist, to know why endometriosis takes a long journey to a proper diagnosis.

Endometriosis can lead to severe period cramps
Endometriosis can lead to severe period cramps. Image courtesy: Shutterstock

Common symptoms of endometriosis

Due to endometriosis, the patient might experience continuous pain or discomfort in the lower abdomen, aggravated pain, specifically during periods or painful bowel movement. Or there could be even severe pain during intercourse. It usually starts in the early 20s or in some cases even before the 20s.

According to Dr Sharma, a majority of endometriosis symptoms show up in the reproductive age group, which is from 20 to 45 years. After that, the symptoms reduce on their own, owing to menopause because the hormones decrease after that stage. So, the chances of any inflammation or lesions are very dim.

Why does endometriosis take long to be diagnosed?

As per Dr Sharma, endometriosis has been graded into 4 stages- minimal, mild, moderate and severe. But the symptoms vary from person to person. There could be mild endometriosis with severe symptoms like pain and discomfort, and in some cases, a patient could be in a severe stage with no symptoms. In case the patient experiences chronic pain during periods, she will visit the doctor. The doctor performs an ultrasound to see the presence of any lesion or any ovarian (chocolate cysts) that persists for a long time with pain, and the doctor can come to a proper conclusion.

Asymptomatic patients of endometriosis

The reason endometriosis stays undiagnosed for years, according to Dr Sharma, is that sometimes the patients with endometriosis are asymptomatic. The lesion in such patients grows, but there is no sign of pain in the body. The patient might experience mild pain during periods which is considered normal, so the patient doesn’t visit the doctor. In these cases, no ultrasound is performed on the patient, and hence, the condition remains undiagnosed. It comes to knowledge only when the patient isn’t able to conceive even after trying for a year, adds Dr Sharma.

Also read: PCOS and endometriosis are NOT the same! Know the difference

endometriosis can impact fertility
Endometriosis can impact fertility. Image courtesy:Shutterstock

Is endometriosis commonly misdiagnosed?

Today, endometriosis is found in every single organ of the body. The patients show an array of varying symptoms ranging from brain fog to chronic fatigue to abdominal pain to shortness of breath to nerve pain to painful urination. The symptoms are so scattered all over the map. Alongside, these red signs do not just happen during periods. They can be there every single day. So, a such wide variety of symptoms may contribute to the length of time healthcare professionals take to diagnose this condition.

Course of treatment for endometriosis

Depending on the gravity of the situation and symptoms, the treatment could be undergoing laparoscopic surgery or taking hormonal or birth control pills.



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