Endometriosis: a lasting frontier for menstrual taboos

CW: Sexism, misogyny, details of surgery/medical conditions

By Eleanor McKelvey, Head of Online Engagement (Blog)

My sister had only been menstruating for two years before she began complaining about horrendous stomach pain. At the time, I had only been having my periods for a few years myself, and still wasn’t sure what a “normal” period should feel like. This lack of experience, combined with a decidedly inadequate and outdated sex-education, meant I was initially suspicious of my sister’s pain. At school, we were taught that stomach cramps were always temporary, and could be “cured” with Panadol and stretching. Our teachers and school nurse had assured us that focusing on the pain only made it worse, and that with a bit of practice, we could learn how to ignore the pain entirely and carry on with our lives as normal.

I can still remember the precise moment when I realised that was all bullsh*t…

Sarah (my sister) had invited a school friend around to our house. They had been watching a film together, and Sarah forgot to take a dose of painkillers. I walked into the kitchen to see her curled on top of a dining chair, rocking back and forth, with her delicate 13-year old limbs clenched protectively around her stomach. Her face was ashen and her lips were trembling. A few moments later, she ran into the bathroom to throw up from the pain.

Soon, my sister was experiencing chronic pain. Even taking strong painkillers regularly was not enough to protect her. She took a hot water bottle around with her everywhere, and eventually developed burns on her stomach; the sensation of scalding skin proving a welcome distraction from the underlying pain.

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At the age of 13, Sarah, along with my mum, embarked on the lengthy process of procuring a diagnosis. It only took them a few minutes of internet research to realise that it was probably endometriosis, but the GPs were initially flippant. On average, it takes women 7 years to get a diagnosis for endometriosis . This is because surgery is required to fully confirm the disease; but before getting access to surgery, women must convince their doctors that they are experiencing extraordinary pain.

During each consult with a new doctor, my mother would be asked to leave the room so the doctor could ask my sister if she was “Having any problems at school?”. In short, they were asking Sarah if she might be pretending to be in pain in order to get attention.

But who would want the sort of attention Sarah was getting? Classmates and teachers soon noticed the hot water bottle, and the rumour quickly spread that it was for anxiety. (I still can’t decide if it was ignorance or embarrassment that led people to assume that it was for anything other than pelvic pain.)  Teachers were getting visibly frustrated by Sarah’s requests to go to the bathroom or see the school nurse. For a few weeks, my sister was able to use the nurse’s office when she needed to take some time out, but for whatever reason, the nurse soon decided she had had enough of this, and would send my sister straight back to class. On one occasion, as soon as Sarah returned to the classroom, a teacher immediately commented on how unwell she looked, and asked why she hadn’t gone to see the nurse yet.

One evening the pain got so bad that my mum decided to take her to A&E. When she got there, a junior doctor prescribed her an inappropriate sort of pain medication, and then questioned whether she was really in pain, because the drug had worked well for his toothache.

Sarah began to take more and more time off school – one semester she ended up missing half of her lessons. When she was at school, she would often end up in tears; frustrated by the lack of support teachers were offering for missed lessons, and facing regular reprimands for uncompleted homework. She was exhausted by the pain, and her low moods were intensified by the contraceptive pills and pain medication; both of which had other nasty side-effects, despite doing little to relieve her discomfort.

After two and a half years, my sister finally received a laparoscopy (keyhole surgery), which confirmed the endometriosis. During this wait (which could have been much longer if it weren’t for our access to private healthcare cover), Sarah developed severe muscular problems as a result of spending so much time lying down or hunched over. She also had to endure uncomfortable diagnostic procedures intended to rule out endometriosis (including an ultrasound and an MRI endometriosis) despite using this being poor medical practice.

To describe it simply, endometriosis is caused when tissue that is like the lining of the uterus (AKA the endometrium, the tissue shed during normal menstruation) grows inside the chest cavity – including on the outside of the uterus, lungs, sciatic region or diaphragm - where it produces inflammation and pain. During the laparoscopy, Sarah’s endometriosis was ablated (burned off) using a laser. This, combined with continually taking a contraceptive pill (to prevent the build-up of new endometriosis) has thankfully been successful – over the two years following the operation, her pain gradually died down, and she is now pain free.

But such a successful resolution is not guaranteed. Only after the operation did my sister find out how lucky she was. For many women, laser ablation is not sufficient to completely get rid of endometrial tissue, and so does not fully eradicate pain. Laser excision of endometrial tissue is a more effective method of getting rid of endometrial tissue; but being the more expensive option, this procedure is rarely performed.

Even though the diseased tissue may have been removed, endometriosis has left an indelible stain on my sister’s teenage years, and will have lasting implications for her fertility. The disease has affected both her school records and friendships. It is staggering to think that 1 in 10 people with uteruses have endometriosis. Although the severity can vary, for all these people, endometriosis will noticeably impact their quality of life.

Here are some of the key things my sister and I want you to learn from her experience….

1)     Research into endometriosis, like many uterus-related diseases, is limited

-        This is evident from the lack of effective medication, the limited success of treatment, and the fact that no simple diagnostic test yet exists

2)     Even doctors have a poor understanding of endometriosis

-        This article explains it well, but crucially, many gynaecologists are taught that laser ablation and medication is the best form of treatment. This is not true.

3)     Women struggle with being believed about pain

-       This article says it all

4)     The public is generally ignorant about endometriosis

-        One in ten women have endometriosis, but awareness is still low. Only last year did South Australia make the landmark decision to educate school children about endometriosis