I attended the International Pelvic Pain Society Annual Scientific Conference on Pelvic Pain and here are some key points that I learned.
The scientific evidence is clear that a multi-disciplinary and multi-treatment approach is needed to help individuals with long standing pain. The treatment model of choice is to treat the person from a biological, psychological and social perspective.
There was a lot of discussion about young women experiencing pain with their menstruation. The message by medical doctors and gynecologists is that we need to assess these young women for painful periods early, so that we can initiate treatment to reduce pain and maintain function during their menstrual cycles as they age.
They were also saying that treatment should start from a clinical diagnosis of suspected endometriosis versus waiting to start treatment until a laparoscopy (A procedure where cameras go into the abdomen/pelvis to see inside the body) can be done to confirm the presence of endometriosis. Endometriosis is when uterine cells grow outside the uterus. These cells can be found anywhere, for example, attached to the bladder, rectum, small intestines and even the nasal passage.
There was an agreement that we need to start talking to girls more in depth about periods and menstrual pain in schools, at home and with healthcare providers. This sentiment was echoed at a presentation I went to in Oakville to hear Dr. Jen Gunter, a Canadian gynecologist speak. She said we just aren’t talking about it enough to help these young girls understand their bodies and menstruation.
Side note she wrote a book called The Vagina Bible and it covers a lot of education and information that can be useful for young women, pregnant women and menopausal women. We need to know what is going on down there in a meaningful way.
There are a number of pilot projects being launched around the world to introduce menstrual and endometriosis education to our young girls because 80% of women with painful periods have endometriosis. But it is important to state that not everyone with endometriosis experiences pain.
For those that experience pain, the sooner we can educate and set these girls up with a treatment protocol, the better long term outcomes for their quality of life later. We need to stop dismissing painful periods by saying “oh, periods are suppose to feel like X, Y or Z.” If it hurts, it is best to seek out medical advice.
Another take away message from the conference was how you think about your pain significantly predicts outcomes. Most people who experience pain will have an initial fear of pain, fear of movement, fear of pain getting worse, fear something else might hurt, fear it won’t end or you will get stuck there. While these fears are very normal in the beginning, when they persist can lead to unhelpful behaviours and can actually change the chemicals and nerves in our body.
There was a great example by Alison Sim, author of Pain Heroes that she used to describe how your thoughts impact how you feel and therefore behave. Imagine you wake up in the morning, put toast in the toaster and burn it.
Scenario one: you say to yourself oh geez I just burnt my toast, bummer. You feel perhaps a bit upset or annoyed, but quickly decide to either make a new toast or scrape off the burnt part.
Scenario two: You say to yourself Oh look, I can’t even get toast right. You feel sad, inadequate or shame. This might lead to the behaviour of just going to back to bed. If I can’t do this right, what is the point of doing anything else?
Scenario three: You say to yourself, oh my god, if I burnt the toast, what else might I be forgetting or missing? In this case you might feel anxious, alert, and tense. This feeling might then lead to the behaviour of not being able to leave the house, or OCD, or just worrying a lot about what else you might forget, or what if thinking loops.
Scenario four: You say to yourself, this toaster has it in for me and you experience the emotion of anger. This then can translate to the behaviour of violence or acting angrily to others at work or family members.
If you look at all 4 scenarios, the situation is the same, the toast is burnt, but the thoughts around the situation are different that therefore informs the type of behaviours we might exhibit. In scenario 1, it’s not ideal to burn your toast, so you adjust and still get to eat the toast. In scenario 2 the response is more sad or depressed. Scenario three might look more like anxiety, being on alert for the next bad thing to happen and scenario 4 is an overly emotional response.
When we injury our selves or experience pain, there are a number of different ways you can look at it. It’s important to understand that how you are looking and thinking about your situation, impacts your emotions and behaviours. Are the thoughts and fears about your pain helpful? Do they make you feel better or worse? How much do you understand about your pain?
It is important to understand what is happening from a medical perspective, seeing a physiotherapist that knows the latest pain neuroscience can help you understand how pain works and a psychologist or psychotherapist can help you challenge and re-frame your beliefs about pain, so that they are more empowering and helpful.
For an individual with persisting pain, sometimes their world becomes smaller, a goal of the medical team is to really help individuals expand their life around the pain whereby it’s not the only thing pre-occupying their life. If we can begin to slowly expand life to include things outside the pain we can hopefully reduce the suffering from pain.
In some cases of endometriosis pain, the individual may also be experiencing what we call co-morbidities. This means that the individual may have additional problems, such as digestion issues, sleep disturbances, trauma, coping issues, painful sex and/or other diagnoses. Again the sooner we can assess and create a multi-disciplinary treatment plan, we can at least try to mitigate or reduce the risks of developing additional co-morbidities.
If you want to know more about endometriosis, have a listen to episode 29 of the Living a Better Life Podcast where I interview my colleague and fellow pelvic health physiotherapist Jill Mueller about her personal experience with endometriosis and how she became pain free.
Other books to check out.
Pain Heroes Book by Alison Sim
The Subtle Art of Not Giving A…. by Mark Manson which is a take on acceptance and commitment therapy with swearing for someone who needs a more to the point type book.
The Happiness Trap by Dr. Russ Harris
The Opioid-free Pain Relief Kit: 10 simple steps to ease your pain by Beth Darnall
Beating endo: How to reclaim your life from Endometriosis by Dr. Iris Orbuch and Amy Stein, DPT