Putting the END in Endometriosis Stigma

The stigma around menstruation is certainly present in many areas of the world and varies depending on where you live. We have discussed some of the stigmas surrounding periods and even cultural practices involving menstruation in previous blog posts. However, I think it is safe to say that conversation surrounding periods, uteruses, or anything surrounding either, is still pretty taboo. If you think talking about periods is taboo, than talking about diseases or complications related to periods can be even more taboo... Which brings us to the topic of endometriosis; a disease that affects approximately 176 million women worldwide.

Did you know that approximately 1/10 women suffer from this sometimes debilitating disease that leads to chronic pain and infertility? In fact, endometriosis may be the cause of ½ of all unexplained infertility. You probably have a friend or maybe a family member who has shared with you the hardships of dealing with this disease and how it can exacerbate normal menstrual symptoms exponentially. Endometriosis affects millions of women across the globe yet still the lack of research and funding towards the disease causes many women to take years to obtain a diagnoses, or receive inadequate treatment. I remember having a friend in grade 11 who missed school every time they got their period and always told me about the severity of pain that came along with their period. They were later diagnosed with endometriosis and were told they would be infertile by the time they were 18 years old. I remember all of the appointments she had to go to, and the frustration and persistence needed to get any answers.

But what is endometriosis? It’s when endometrium tissue, which normally lines the inside of the uterus grows in other places (pelvic peritoneum, bladder, ovaries, bowel, etc) outside of the uterus, which leads to a chronic inflammatory condition. This is because the endometrium tissue outside the uterus will behave the same way as the endometrium tissue inside of the uterus, which bleeds every month and causes discomfort. Sometimes the scar tissue caused by advanced endometriosis can even lead to adhesions, which is when certain organs become fused together. According to an article published by The Guardian, the disease affects young women in their prime child-bearing years. For some of these individuals, the pain can be so immense that is causes them to pass out or miss work and socializing. Around 50% of all endometriosis sufferers also suffer with having an intimate relationship because the disease can also make sex extremely painful, uncomfortable and even unbearable.

The number of individuals suffering from this disease is comparable to diabetes, yet after numerous doctor’s office visits or even emergency room visits, many individuals are told its “all in your head” due to a lack of knowledge, or ignorance and a reluctance to discuss “women issues”. The ambiguity surrounding the disease has even lead to 25% of all sufferers feeling suicidal at some point in their lives because of its ability to cause consistent pain thus affecting menstruators in numerous areas of their lives (i.e. career, mental health, relationship, etc). Many individuals face the challenges of being misdiagnosed with other things such as UTIs, cysts, irritable bowel syndrome, S.T.Is, etc, before even finding minor relief for their symptoms.

“Carol Pearson, 43, had to give up the successful career she loved because she was too ill too often. “I hated losing my career,” she said. “I worked my socks off to get to university and become a chartered accountant. I was in a management position for many years and paying taxes. I worked for my company for 13 years and they did everything they could to keep me at work.” But after extensive surgeries to the bowel and bladder, which did not heal well, resulting in emergency trips to hospital in an ambulance on more than one occasion, everybody realised her career and her condition were incompatible.

Pearson had bad period pains from the age of 11 but adopted the stoicism of her feisty mother in the north-east of England and suffered in silence. It took 20 years to get a diagnosis. Studying English at Oxford University was tough. “I got together with my ex-husband at university and when we started to have sex, it was incredibly painful. I thought it was all in my head. I thought I need to get over this. I should have gone to get help but I was too embarrassed to see a GP,” she said. She did not go until she started to bleed a lot in her late 20s, by which time she had advanced disease.”

Some ways that endometriosis sufferers manage the symptoms are through lifestyle changes, hormonal contraceptives, I.U.D.s, pain medications, surgery, and other medications such as antagonists and danazol, which completely stops menstruation and has lots of side effects. It is firstly suggested that individuals change their lifestyle through exercise, healthy dieting and relaxation routines. Some women claim that certain foods can exacerbate their symptoms, so they avoid these foods. Others have reported that doing mindfulness routines, meditation, yoga and or other exercise helps to reduce their chronic pelvic pain. In five studies that involved 1,187 women, the average time to get a diagnosis was approximately 8 years. This is due to both internal and external factors.

“Women may conceal the severity of menstrual pain to avoid both the embarrassment of drawing attention to themselves and being stigmatized as unable to cope.”

If you feel that you or someone you know may suffer from any of the symptoms discussed in this article, tell your doctor you would like to be tested for endometriosis. If more individuals recognize the symptoms of the disease, they can go for further examination and find ways to help alleviate the discomfort sooner. If you have a friend that is comfortable talking about their endometriosis, ask them what it’s like for them, as symptoms can vary depending on the person. Amplify the dialogue around endometriosis, menstruation, and other gynecological disorders.

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