Pain: The experience

Pain: The experience

Pain: The experience

How can we measure our pain, and why does it matter?

Written by Katie

Katie is a content creator and writer from Birmingham, UK. Passionate about menstrual, environmental and social justice & driven by the need for integrative education and intersectional advocacy.

No, it’s not the next life-altering, breath-taking, exhilarating ride brought to you by your favourite theme park… but it is life-altering. Millions of people suffering with menstrual health conditions experience it everyday. And similarly to a rollercoaster, you don’t know when it will end, how many twists and turns it will have along the way, or how it will affect you when you’re there and it’s really happening. In other words, you are not in control. Unlike a rollercoaster, you can’t choose not to board this ride, it just sweeps you along, admission free.

There’s much more to this. Pain is something we have all experienced throughout our lives, whether it be from stepping on a lego brick at 6am on your way to that first cup of coffee, or whether it is something more sinister and long-lasting, leaving a stamp on your mind, body and soul. Whichever way we experience pain, we experience it alone: with no direct comparisons, no get out of jail free card, and when it comes to menstrual pain, and often when it comes to menstrual pain, no effective pain management solutions.

Pain being so subjective presents a huge challenge when it comes to communicating our experiences, obtaining diagnoses and ultimately getting the help we need. After speaking with a GP and hearing about the huge variances in not only pain level, but how everybody has a different tolerance for the pain levels they are experiencing, we were left a little confused… of course this is the case, anecdotally we all know this to be true – still, this brought us no closer to understanding how we can objectively measure pain in order to gain a deeper understanding of menstrual health conditions.

The importance of truly understanding the pain people experience in response to different conditions stems from the need to create solutions. Without a proper understanding of the pain levels we are experiencing, we cannot measure the changes in pain levels resulting from solutions and interventions at a medical level. Nor can we understand how pain derived from a specific condition – such as endometriosis – affects the patient group as a whole, over time, during the span of our cycles in terms of physical pain.

So how do we quantify our pain?
These are the two main techniques used in the medical space:

The visual analogue scale (VAS)

How does it work?
Quite simply, the visual analogue scale is a unidimensional scale, used to indicate pain levels. Most commonly, the scale sits on a horizontal line, with the scale starting at ‘no pain’ on the left, moving to the right with ‘pain as bad as it could be’. The patient carries out the assessment themselves, simply pointing to or marking where on the scale they feel they are. The principle can be presented in a number of ways, but remains the same throughout. In paediatrics, the scale often relies on pictures of faces from happy (no pain) to really sad (the most pain). 

Pros
Clearly the simplicity and adaptability of this scale means that it can be applied in a wide range of settings and is accessible to most of us, from children, to professionals. After taking an initial measurement of pain level, ongoing monitoring of pain can be measured relative to the previous reading, so it is possible to build a picture of an individual’s pain ‘journey’ over a period of time, for instance a stay in hospital. It’s easy to use, accessible to nearly everyone, and can build a picture of improvements/deterioration in the patient’s condition – and that’s why it is so commonplace in medical care.

Cons
While this is great for understanding the subjective pain levels of an individual, we cannot build a picture of particular patient populations’ experiences using this scale. ‘Low level pain’ for one individual could be near the limit for another, and vice versa… this is not an objective measurement. Moreover, the complexity of pain including types (such as dull aches or sharp pains) is not captured on this scale.

The numeric rating scale (NRS)

How it works
The numeric rating scale applies the same principles of the visual analogue scale, but this time (you guessed it) with numbers. The scale usually runs on a horizontal line from left (0) to right (10), 0 being the least pain, 10 being the most.

Pros
The NRS can be administered verbally, making it perfect for tele-health consultations and patients with limited mobility. Similarly, since the scale relies on numbers rather than words, the scale can be used to communicate pain levels no matter the nationality of the patient. The scale has been found to be highly reliable across literate and illiterate patients alike. 

Cons
Along with the same cons that apply to the VAS, the numerical rating scale is also limited by its linear nature not allowing for qualitative descriptions of the complexity and idiosyncrasies of the pain experienced, perhaps to a greater extent than the VAS since written descriptions are not included in this scale. 

To sum up

They are simple. They are effective within the bounds of one patient’s experience. They are often used interchangeably, with VAS scores being converted into numerical ratings for clinical use. But is there a better way, one which accounts for our unique perspective on our own pain, or is this the best we can do? The medical profession has been using these scales for over a hundred years, and there is a reason for this – the ability to quantify pain in a simple number is eminently useful.

The future of pain measurement

Undoubtedly there is room for improvement. Regarding menstrual health, being able to articulate our pain effectively is critical in obtaining diagnoses and being ‘taken seriously’ by the medical professionals we rely on. There is a reason it takes an average of 7.5 years to get diagnosed with endometriosis. A lack of research into the nuances of (e.g. endometriosis) symptoms resulting in medical professionals relying on an oversimplified diagnostic pathway means that diagnoses often take years, or are completely missed, in some cases this is paired with stigma around ‘normal’ levels of menstrual pain meaning symptoms are not considered problematic. The reverse of this is contributive to the same problems: the lack of education around menstrual health from a patient perspective materialises in patients not being able to effectively communicate their symptoms (worsened by the cyclical nature of menstrual conditions), or even not identifying when symptoms are problematic and outside typical bounds of cramping pain. Clearly, when it comes to speeding up diagnoses for people living with dysmenorrhea, nuance and precise descriptions of the complexity of pain are essential – quantitative scales are not going to cut it.

Qualitative scales do exist, with several in use, the most common of which is an adaptation of the VAS. The VASQ asks “How is your pain today?” and the answer can define it as a ‘good pain day’, a ‘bad pain day’ and anything in between. However, for medical use these are often converted into quantitative figures, and once again the complexity of how we experience is oversimplified. Add a pinch of stigma, and a dollop of shame and guilt, and qualitative answers being converted to quantitative figures potentially underrepresents pain levels. Evidently, its subjective nature presents no simple answer to measuring complex pain; it is something that needs to be developed with menstrual health in mind

We need data, and lots of it. If we are limited to measuring pain on a quantitative, objective scale, the more information we have the better. Patterns relating to varying prolonged pain and hormonal cycles can be identified across patient groups and begin to paint a picture of how a condition such as endometriosis materialises pain, at which stages and how this impacts on daily living. 

“Researchers from MIT and elsewhere have developed a system that measures a patient’s pain level by analyzing brain activity from a portable neuroimaging device. The system could help doctors diagnose and treat pain in unconscious and non-communicative patients, which could reduce the risk of chronic pain that can occur after surgery.” Once this tech is developed and affordable, there is huge potential for gaining objective data about pain, and how we experience it, without our ‘communication styles’ affecting the way we describe our pain. But this is a long way off.

In the meantime, dig into the psychology – not only might we experience the same level of pain differently to someone else, we might experience the same level of pain differently ourselves, from one day to the next, particularly with hormonal cycles affecting sensitivity and mood.

It’s time to develop a closer relationship between physical health and psychological influences; emotional experiences are also an essential part of this puzzle. An integrative approach would open the doors to much deeper research, improving our understanding of pain amongst specific patient groups and opening the doors to developing effective pain management solutions. 

Kaleidas community, let’s get to work. 

Pleasure in pain?

Pleasure in pain?

Pleasure in pain?

Are painful periods a gift we can all learn from, or is it time to stand together in saying our pain doesn’t define us?

Written by Katie

Katie is a content creator and writer from Birmingham, UK. Passionate about menstrual, environmental and social justice & driven by the need for integrative education and intersectional advocacy.
Our silent reminder of inequality comes around every month. No matter how much we talk about painful periods, when it comes down to it, we go through the trauma on our own.

Squatted down in the break room toilets, trying not to scream out in pain – “she was only nipping to the loo” said her line manager, “why is she taking so long?”.

We try to move through the ordeal without attracting too much attention, in fact, without attracting any at all. It isn’t very ‘lady-like’ to reveal information that could shame us, so we protect ourselves, hiding instead. But for anyone with dysmenorrhea or endometriosis, this level of harm is totally normal. I’m called into HR again, too many sick days without a reasonable explanation.

Doctors’ notes aren’t always possible to get when the doctor doesn’t know what’s wrong with you. Constant pain causes irritability. It causes arguments. When you can’t explain your low mood or short temper without embarrassing the company you keep, arguments spiral and relationships are tested.

Is it so surprising to lose your temper when you’re suffering alone?

Perhaps if people felt they could talk about their experiences, the burden would not be so heavy. It is one thing to experience extreme pain each month – it is another to have to hide it. If we take away the need to be discreet, we open up the possibility of having real, honest conversations about our welfare.

However, it is essential that these conversations are steered by those who bleed.

I have often heard menstrual health be referred to as something that gives us strength, defining our experience on this Earth. While it may be true that people enduring such pain have many shared experiences and develop shared strengths, is it reasonable to suggest that we benefit from this pain?

My gut says NO. I may be stronger now than I was at 12. I’ve learnt essential life skills such as: being sneaky and furtive to hide the fact that I just stained my 4th pair of pants this week; developing a strong character that can withstand days of non-stop pain and still smash that presentation at work; or flourishing into a deeply empathetic, nurturing person who can spot the moment someone is in pain. However, there is more than one way to ‘skin a cat’.

Those that don’t bleed can still develop these characteristics and do so in their own time…
without the experience of excruciating pain.
This is surely an advantage. In suggesting that we grow strong, resilient, hardened in some way – and closer to our ability to reproduce – we are completely written out of the conversation. We are no longer individuals who deserve relief from this pain, we are a collective served by ourselves with no need for outside input. The reality of painful periods becomes an open and shut case, one that the medical world need not investigate, one that employers need not mitigate for, one that we need not reach out about, because we must learn on our own. It is this sort of archaic attitude that has justified the neglect of women’s health for centuries, describing pain as a fact of life for us to endure alone.
Historic ideas of female inferiority affect everyone who bleeds today.
Medical research has been founded on the understanding of an average white male, excluding both women and people of colour from accurate diagnoses for generations. Women’s health often describes extreme pain as ‘discomfort’, undermining our experiences and subduing our requests for help. Women have been viewed as helpless, over-emotional and erratic, perpetuating the belief that any suffering we should experience as part of our reproductive health would only benefit us, helping us fulfil our ‘true purpose’. These beliefs about perceived strength and suffering as a martyr to human life seem to be the crux of the argument that we can – maybe even should – handle this pain.

As I squat over the toilet for the fourth time today, a tear slipping down my cheek and into my mouth, I feel a pang of resentment. “If it were men who bled, they would surely have access to more effective pain relief, they might have monthly prescribed days off work and they might actually get a diagnosis!”. My teeth are gritted with rage. When I sober up from the pain, I realise the absurdity of making such grand assumptions about a theoretical role reversal. But I understand there is a grain of truth within my frustrations.

I want more research, more medical intervention, employment rights and better diagnoses for people living with endometriosis, dysmenorrhea and other such conditions – I want it for everyone who bleeds. On average, people who bleed will do so for a total of 10 years (combined). For those with endometriosis and dysmenorrhea, that means spending an average of 10 years in extreme pain.

But how do we break out of being so polite about our pain, in a society that doesn’t necessarily respect it? Conversation.
We need to be brave and talk more openly about our experiences, take a risk on telling an employer, a partner, a friend, a teacher. The more we talk, the more the world understands our pain, and the more we understand each other’s pain too.

But it isn’t a one-way street, we need those that do not bleed to listen and really hear what we are saying. We may have much to learn from the notion of Stubborn Optimism, made popular by Christiana Figueres. She talks about ‘Stubborn Optimism’ in relation to climate advocacy, as the practice of persistence and stubborn conviction – essential to maintaining stamina in any form of advocacy – while sustaining the hope that things will get better, so that we can share our vision effectively and inspire others.

This resilient approach will be essential in conveying our experiences and breaking free from traditional stigma about periods. Affecting change is no easy feat when suffering from chronic conditions, but together we can all be stubborn optimists, paving the way for a new attitude of respect for menstrual health.
It’s time to say no, I will not accept this level of pain and nor should you either. There is so much potential for medical relief – we just need to demand it.
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