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Writer's pictureZara Hussain

Understanding Endometriosis

Growing up as girls, we are taught to keep our periods a secret, to hide tampons, to be embarrassed when opening a sanitary pad in a public bathroom. Even the word, ‘period’, makes so many of us uncomfortable. But why is this?


We are upholding a sexist agenda, promoting shame in young women, who are already working through their own hormonal changes. Why are we allowing this stigma to infect our understanding of female reproductive health?


Endometriosis. A condition that you may not be familiar with. A condition, that I myself, have been diagnosed with. Endometriosis is where the cells similar to those in your uterus, grow within other areas of the body. These cells react as though they are in the womb, eventually getting ready to shed and bleed, but unable to, ending up stuck in the areas that they have affected. Over time, this causes inflammation and scar tissue.


There is no cure for endometriosis. Instead, a few ways to manage and treat your pain. Surgery, contraceptive hormone treatment, pain management and therapy are just a few types of treatment that may be offered.


Symptoms of endometriosis include:


- Chronic pain (back, leg, pelvic etc…)

- Fatigue.

- Infertility.

- Pain during / after sex.

- Issues with your bowels.

- Heavy bleeding.

- Pain when urinating.

- Irregular periods.

- Ovulation pain.

- Painful periods.

- Nausea.

- Blood in urine.

- Fainting (especially when menstruating).

- Frequent infections.





These are just a few of the symptoms that come with endometriosis. In the UK alone, 1 in 10 women suffer with the condition, similar to the number of those with diabetes, so why is there so little understanding about it?


With the lack of education surrounding endometriosis, I joined Facebook groups, allowing me to communicate with other women, struggling just as I am. The one thing we had in common, was that we had all previously had our symptoms dismissed, something that is upsetting, to say the least.




One lady described her experience with the condition, showing just how the lack of awareness has affected her life, “Endo has ultimately taken over my life. I even lost my job, due to my unexpected flare ups, causing me to take time off. Being in such unbearable pain has sent me into spirals of depression… It took me years to even be taken seriously by my GP, after consistently being told, ‘the pain was normal.’ If I was taken seriously beforehand, I may not be infertile now. There needs to be further education into this destructive condition.”


In 2019, a BBC survey showed that out of 13,500 women diagnosed with the condition, almost all stated that endometriosis had negatively impacted their mental wellbeing. This further shows us that chronic illnesses are more than just pain. Endometriosis has sent many people to seek psychiatric help. Yes, depression isn’t a direct symptom, but these mental struggles are by-products of living with a detrimental condition, like endo.


It's one thing being misunderstood by your peers, but when medical professionals themselves dismiss you, it shows that there is a systemic culture, causing harm to those with female reproductive systems.


What’s worse, is that 62% of women would put off going to their doctor, when experiencing symptoms. Whether this is due to the fear of being dismissed, or the myth that ‘painful periods are normal’, this is unacceptable. Perhaps better education would prohibit this in the first place.



On average, it takes 8 years to receive an endometriosis diagnosis. So not only are we afraid to go and seek medical advice, but physically unable to. Luckily, after 4 years of not knowing what was wrong, struggling with horrific pain and heavy bleeding, I was able to be seen via private healthcare.


After years of being in and out of A&E, I received my diagnosis. Sadly, this is an unrealistic option for most.


A 2020 study showed women with endometriosis were labelled as ‘an excessive whiner or complainer without reason’ in family, healthcare and social settings.


Writing this, I truly cannot comprehend why there is such a stigma around the female reproductive system. Is there something inherently disturbing about my body, something I’m missing here?


I remember being 12, wondering why I was having such heavy menstrual bleeding. I knew something was wrong but felt embarrassed even thinking about it. The thought of my own reproductive system disgusted me. Looking back at this, I’m disappointed, knowing how I felt. The idea that my period was ‘dirty’ and my worries about my health were ‘pointless’. So many young girls are programmed into thinking this way, but we must work to tackle this sexist shame.


Perhaps it all links back to immaturity and lack of education. Like I touched on earlier, the words ‘period’ or ‘vagina’ make people severely uncomfortable. Is it internalised misogyny that causes us to shiver at the thought of our own bodies?


The stigma around women’s health is seen not only within society, but even within the medical industry itself. Studies show women have a longer life expectancy than men yet tend to live less of their lives in a state of good health. BBC Future reported that “women are less likely to have their pain treated, their symptoms taken seriously, or to be given a diagnosis than men.” This is evident in the diagnosis times and mistreatment faced by those with endometriosis.


Diseases primarily or solely affecting men are shown to be overfunded, whereas those affecting women, were disproportionately underfunded. For example, in 2020, the US government spent $26 million on endometriosis research, yet spent an average of $1,156 million on diabetes - a disease that affects a similar amount of people. The only difference being the lesser funded condition exclusively affects women.


And it’s not just being a woman that can cause you to be mistreated within the healthcare system. Ethnicity and race also play a huge role in how you are treated. Medical reports show that women of colour were nearly half as likely to receive an endometriosis diagnosis than white women. There is a systemic racial and gender bias within medicine.


Another survey even showed that women of colour were less likely to receive opioid treatment, than white women. These biases that rule society, also find their ways into the medical industry. An industry there to ‘look after us’.


The G20 economic system shows that the UK has the highest female health gap within G20 countries. For a country so ‘progressive’, this is shocking.


Statistics show that women are much more likely to be misdiagnosed when seeking medical help. Reproductive health aside, women are 50% more likely to be misdiagnosed following a heart attack, than men. These oversights can ultimately result in death. After a stroke, women are 30% more likely to have their condition disregarded too. Yes, mistakes happen, but the common denominator shows us that this is more than a fluke. Women are vulnerable when seeking medical advice.


So why is there such a large gender gap within medicine?


For years, women have been deemed a ‘medical mystery’. When male health has dominated the research industries for centuries, women’s health is disregarded, putting us back at square one. All trials and studies focused solely on men. No wonder women’s health is so misunderstood.


In fact, the US National Institutes of Health didn’t require medical research to include women until 1993 – the apparent reason for this being the complexity of female hormones.


When speaking to women about their experiences discussing reproductive matters in a healthcare setting, all said that they had been told their period pain was ‘normal.’ Firstly, let me state, this is not true. Lone Hummelshoj, chief executive of the World Endometriosis Society explained, “If period pain interferes with school, work and social activities, then it is not normal.” So yes, slight discomfort is to be expected, but anything disrupting your daily life or causing you a significant amount of pain, is not ‘normal’.


Many women also mentioned feeling uncomfortable if they were to speak to a male doctor. This is due to the consistent dismissal of female pain, seen predominately in male professionals. But let me just state, many women have also said similar. It shows that this stigma is unconsciously consumed even by fellow women.


Because we see the rejection of female health, the ignorance grows, further placing women away from our own doctors.


Symptoms such as nausea, trouble breathing, and headaches are so often equated with emotional stress. Whilst this may be the case, often these signs indicate a more serious problem.



As women, we even dismiss one another, telling ourselves that this pain is normal. That excessive bleeding is normal. This is because for centuries, we have had sexist agendas wired into us. Perhaps it links back to when women were dismissed years ago and branded with a diagnosis of hysteria.




An outdated concept linking women’s pain to being mentally unwell. This dates to 1900 BC Egypt, ancient documents referencing ‘hysterical disorders’ seemingly caused by female reproductive issues.


I have been asked if I was lying about my pain, just to be given drugs, when repeatedly in A&E before my diagnosis. This experience left me speechless. Female doctors assumed my pain was a façade to get drugs. I was fourteen. Fourteen and terrified as to why my body was betraying me.


These implicit biases may often be sincerely unintentional, but this stigma contributes to the lack of understanding of endometriosis. Because of this, we need to listen to women about their struggles and avidly educate ourselves on feminine issues.


There’s no denying that once an agenda becomes ‘tradition’, it is rather difficult to break out the cycle. The history behind hysteria explicitly shares how sexist philosophies affect modern-day medicine. Women have no choice but to strongly advocate for their own health otherwise they run the risk of being dismissed.


A study published by the Journal of Fertility and Sterility even explained, “this centuries-old notion linking chronic pelvic pain to mental illness exerted tremendous influence on attitudes about women with endometriosis in modern times, contributing to diagnostic delays and chronic indifference to their pain for most of the 20th century.”


However, this doesn’t mean that it’s impossible to do something. We can and will work together to create a safer world for women and their health.


So, what can we do to overrule this harmful stigma?


- Educate ourselves, friends and family. This helps to normalise and rid of the shame around discussing women’s bodies.


- Learning to check for breast cancer, teaching about menstrual cycles / changes and being aware of STD signs all help when understanding reproductive issues.


- Teach detailed sexual and reproductive education in schools. As well as this, ensure both girls and boys are taught about one another’s reproductive health, rather than split by gender.


- Stop viewing periods as ‘dirty’ or ‘shameful’. Empower young women into understanding and loving their bodies, especially whilst going through something as tricky as puberty.


- Speak to a medical professional if we have any concerns about our health and stand up for ourselves if we feel unheard.


- Ensure hospitals / medical centres are properly educated within female health and routinely check that proper care is being taken to stick by this.


- Have open discussions. Communicate to people about your struggles, this helps to regularise the idea of conversation. If you would tell a friend about your sinus infection, why wouldn’t you discuss any issues with your ovaries?


- Provide the same amount of money into women’s health research, as we do for men. Ensure the same attention is being given to female reproductive research, routinely checking to prohibit any inconsistencies.


- Stop spreading myths that ‘chronic period pain is normal’. If you or your peers are struggling with pain, speak to a doctor.


- For the parents out there, just know you are doing an amazing job. Continue encouraging your children to have open, honest discussions regarding puberty, anatomy etc…


For any further information regarding endometriosis or ways you can help to spread awareness visit: https://www.endometriosis-uk.org

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