Normal or not normal?
“It had gotten to the point that I was having full blown panic attacks the days before my period because I knew the worst pain of my life was coming”
“Peer support groups have been a godsend in helping me come to terms with and live with the condition.”
“People look at you funny when you say “it’s my period pain”. At times it’s truly isolating”
Quotes collected 2023 via an online form sent to our followers.
What is normal? Is it something that can really be defined?
“Normal” isn’t the same as “common”. “Normal” usually depends on context - your body, your environment, or your culture. In medicine, normal is so often defined by what is common specifically for healthy white cis men.
The definition of “normal” is important because it impacts who can get care and who can’t. People often don’t seek healthcare for something they think is normal and doctors may not provide care if they don’t think something is abnormal.
Menstrual stigma means we don’t often openly discuss periods, so it can be hard to break down this restrictive definition of normal. If a symptom bothers you, that’s all that matters to warrant seeking help - forget about what’s “normal”or “not normal”!
Pain
Pain is subjective, so there is no perfect universal way to measure it. Many people have been to their doctors about pelvic pain, only to be told “it’s women’s lot to suffer”. Our pain is so often ignored and downplayed.
Biology, psychology, social factors and cultural beliefs all influence our experiences of pain and how it is perceived by others.
Factors that affect pain include:
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In the past, research mostly focused on men. Reasons included genuine concerns about the risk to potential pregnancies when testing new drugs, but it was also thought women were ‘too complex’. Rather than try to understand this complexity it was easier just to exclude them.
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It takes on average 16 minutes longer in A&E for women to get painkillers for abdominal pain than men. Because pain is considered part of the ‘female experience’, it often isn’t taken seriously. But also women are pressured by society to downplay their struggles and not be a ‘burden’.
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There are a number of long-standing medical myths that Black people have thicker skin, are less sensitive to pain and have higher pain thresholds. These myths affect patients today - Black patients are 22% less likely to get painkillers prescribed than white patients.
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Living with chronic pain forces you to develop coping mechanisms and masking techniques. Ableism often forces us to hide our pain to avoid making people uncomfortable. This can be particularly infuriating when going to the doctor for help, only to be told “you don’t look like you’re in pain”.
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It used to be believed that people with autism were more tolerant to pain. In fact, we are now understanding it may be the case that neurodivergent people experience pain from different sources, have more pain anxiety and communicate pain in different ways than neurotypical people. Being in extreme pain can also trigger going non-verbal which makes communicating even harder.
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Pain can feel worse if you are in a bad mood and better if you are in a good mood. Chronic pain can cause depression, but depression can also make pain feel more intense. People with chronic pain are often dismissed with the explanation that it's their poor mental health causing their pain and this is what needs treating.
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Our past experiences of pain alter our perception of pain. Traumatic experiences can alter how our nerves and stress systems function. This relationship is commonly misunderstood and many people who reveal a traumatic experience in the past will find that this is blamed as the cause of the pain.
How can we measure pain?
Pain is a subjective experience influenced by factors that can change from day to day. Can it really be quantified?
Pain scales can sometimes make patients’ lives more difficult - if you go to the doctor and say your pain is a 7, and if last week it was an 8, the doctor may take this as a sign to stop helping as it appears to be improving, even though 7 is still an extremely high pain score.
Endometriosis is associated with many different types of pain. Useful questions for doctors and researchers are things like ‘how unpleasant is the pain?’, ‘is the pain like shooting, stabbing, aching, dull or something else?’, ‘where is the pain?’, ‘does it travel?’, ‘what does the pain interfere with?’
How painful was your last period?
“At 16 I started my journey by going through to sexual health clinics and expressing the pain I felt before I started my period, as I bled, ovulation and when having sex. It took until I was 22/23 to finally be offered a laparoscopy to see if I had it.”
Bleeding
How heavy is heavy?
We almost never see how much other people bleed, so we often have no context for whether our periods are considered heavy. Historically “heavy” has been defined as losing more than 80 ml of blood - but who measures the volume of their periods? More recent research suggests that “heavy” bleeding should be defined if the person experiencing it feels it is too heavy.
The NHS advises a heavy period is considered:
needing to change your pad or tampon every 1 to 2 hours/emptying your menstrual cup more often than is recommended
needing to use 2 types of menstrual product together
periods lasting more than 7 days
passing blood clots larger than 2.5cm
regularly bleeding through your clothes or bedding
avoiding daily activities or work because of your periods
A person with an average flow across 5 days will use about 20 pads per period.
A person with a heavy flow from endometriosis could use up to 95 pads for a similar length period.
The pill can reduce symptoms of endometriosis. How many people’s endometriosis has been missed because they were put on the pill for heaving menstrual bleeding or severe period pain without any investigation? How many people can’t take the pill for managing symptoms because of the side effects?
What effect does the pill have?
Endo and the economy
What is defined as “normal” is usually tied up with your ability to contribute to the economy.
Can you go to work? Can you perform your duties? If yes, your symptoms will likely be considered “normal”. Often the only way to get your symptoms taken seriously is if they put the economy at risk. The same goes for securing funding for medical research.
Our economic system disadvantages people with endometriosis. 38% of patients are concerned about losing their job, while 35% have a reduced income due to their illness.
#MyAlwaysExperience
Always pads from Kenya, image available at: allafrica.com/stories/202004010126.html
Menstrual capitalism is also a part of neo-colonialism.
The #MyAlwaysExperience campaign organised by women in Kenya in 2019 highlighted how they noticed the pads Always sold there were of significantly lower quality to the ones in the West, causing rashes and other medical problems.
Thinx Period Pants
Image available at: thinx.com/products/period-all-day-everyday-comfort-hi-waist?variant=40174024556616
The commodification of menstruation - and wellbeing in general - has not necessarily made the world more feminist. On the outside, these menstrual companies may appear as having good intentions, but they are often just co-opting the language of social justice to turn a quick buck.
The period underwear brand THINX has had an explicitly feminist brand image from the get go - they publicly support feminist causes, and have fat, disabled and global majority models in their online shop. In 2017 after the founding CEO stepped down due to sexual harassment allegations, it was revealed by staff that they were subject to verbal abuse, a toxic work environment, low pay, and that the company only offered three weeks paid parental leave.
The next CEO addressed many of these issues.
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What is Endometriosis?
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Normal or not normal?
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The medical pathway
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What next?
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Let's talk about it
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Making the unknown known
