What Is Endometriosis?

What is It?​

• 11% of US Women are diagnosed with endometriosis

​

Endometriosis is a chronic disease caused by a tissue similar to the uterine lining growing in other regions of the female reproductive system, sometimes even expanding to the intestines and diaphragm among other internal organs. 

    The pain stems from the fact that this tissue - that is meant to shed during one’s menstrual cycle - cannot be flushed out of the body because it does not grow in the uterus where it belongs. This causes inflammation and scarring. These scar tissues can form into large bands called adhesions which cause the surrounding organs to stick together, leading to pain and discomfort. The adhesions are not always able to be caught on scans, as they range from very thin to very dense. Surgery involving the separation of the organs from the scar tissue is a very common practice in cases such as these, however, it will not remove the discomfort, as the adhesions cause a pain that is different from the initial endometriosis pain.  Additionally, if the endometriosis is found in the ovaries, endometriomas - cysts - may form. 

 

​

Symptoms

• Painful periods

• Lower back pain

• Excessive bleeding

• Infertility

​

Symptoms of endo range from painful menstrual cycles not only in your stomach or abdomen region, but also in your lower back, excessive bleeding such as spotting in between periods or an extremely heavy flow. Infertility is also common among individuals with this condition. Unfortunately, some individuals with endometriosis show no symptoms at all, making it harder to diagnose. 

    Retrograde menstruation – where period blood flows through the fallopian tubes back to the pelvis instead of exiting the body like it normally would – can be linked to endometriosis. The blood that is being flushed out carries the uterine lining, and if it is not properly expelled, it can attach to the walls of nearby organs. From there on out, that tissue will keep growing. Immune diseases such as lupus, inflammatory bowel disease, and celiac disease can perpetrate endometriosis because the body may not be able to scope out the harmful tissues. Having endometriosis raises one’s chances of getting ovarian cancer as well as infertility, because the egg kept in the ovaries must travel down the fallopian tubes in order to be fertilised. The endometriosis tissue has been known to block the tube and stop conception.

    Increased levels of estrogen play a big part in endometriosis. Going on birth control, exercising regularly, and avoiding large doses of caffeine and alcohol are all efficient ways to balance your hormones. 

​

Diagnosis and Medical Gaslighting

• 25% of patients labeled as “difficult” and are not taken seriously

• Imaging tests

• Takes around 7-10 years to diagnose

• 25% of patients labeled as “difficult” and are not taken seriously

​

 When getting diagnosed, your doctor may do a pelvic exam where they will feel for scars and/or cysts in your uterus. You may also need to get imaging tests to check for signs of endometriosis tissue. 

    

Unfortunately, it takes on average 7 to 10 years for a person to get diagnosed after their first initial symptoms. 6 ½ million women in the United States (11%), have this condition. So why does it take so long to diagnose if it’s so common? This has everything to do with society’s perception of women as “emotional” and “irrational”. In fact, this dates back to ancient times when it was believed that the uterus was a living being that would travel around the person’s body, causing illness and disease. This stereotype has been upheld to the modern day. But instead of doctors saying that your uterus has somehow ended up in your kidney, they will relate most of your complaints to your period – especially in the case of endometriosis. When a medical professional jumps to conclusions for a “diagnosis” (or lack thereof), without having performed the proper tests or conducted the appropriate examinations of the patient, that is called medical gaslighting. The term gaslighting originated from a play set in the 1800s where a man is actively manipulating his wife and making her question her own sanity for the sake of getting ahold of her inheritance. As the synopsis of the plot suggests, gaslighting is a technique for distorting an individual's perception of reality as well as the world around them through lying. This is not uncommon in the medical world because of the preconceived notion for women to be dramatic, or even simply believing that they know best because they have the upper hand in the doctor-patient relationship. The person in charge of providing the diagnosis might not have any direct malicious intent towards whom they’re treating. Their behaviour could be a consequence of their lack of awareness towards certain conditions. Minorities such as women, members of the LGBTQ community, and people of color are especially subject to such microagressions. Some healthcare providers even go as far as labeling individuals who they suspect are being irrational as “WWs”, or Whiney Women. The code would be written on the person’s medical chart without the patient’s knowledge, as a way to let their coworkers know that “there is no real issue”. Additionally, patients can be labeled as “difficult” especially when their symptoms can be linked to mental health issues. These patients make up 15-25% of total clientele. 

When a person is subjected to medical gaslighting and invalidation stemming from prejudice, it can result in a major loss of hope, feelings of frustration and anxiety, as well as depression. The only ways to fight medical bias relating to endometriosis is to talk more openly about the condition, keep funding research, and train practitioners to communicate correctly with their patients. 

 

 

What can we do?

 

• Birth Control options

• Surgery

• Funding research

• Education medical staff on medical gaslighting and instructing them on how to make their patients feel seen

• Lessen stigma around topics such as endometriosis and speak more openly about it