Endometriosis and Pain: What You Need to Know
Endometriosis affects about 10% of women. Roughly, it means if you have 10 female friends, one of them is likely to have “endo”. It should be easy to estimate how many women with endo you can know, without necessarily knowing they have it.
Another impressive figure is that internationally, it takes over 8 years to get diagnosed. Women think their symptoms (pain during period or ovulation, bowel issues, tiredness, excessive bleeding … ) are normal or too embarrassed to seek help, and doctors don’t recognise symptoms.
While endometriosis has a prevalence that is similar to that one of asthma or diabetes, there is much less money put into the research. This results in recommendations that are not supported by evidence and poor clinical outcomes: 20% of patients experience no change or worsening of symptoms after surgery, and 60% of patients have repeat surgeries.
One of the things that need to change is a heavy focus on biomedical interventions (surgery & medication): everything that we know about persistent pain tells us that psychosocial interventions are equally important if only to address anxiety, depression and catastrophising.
But there is one educational intervention that can be treatment: Pain Science Education.
“It has not been made a priority historically. Women’s health and below-the-belt issues have not been a priority in medical schools or medical practices.”
(Shannon Cohn, Founder of Endo What?)
Nearly every time I mention that in my capacity as a Feldenkrais® practitioner I am supporting people living with persistent pain, I have questions coming about endometriosis. That’s why I decided to dig deeper into some research and see how up-to-date neuroscience of pain can be applied in this case. I must confess I used to think of “endo” as a condition where the pain comes from the tissues and therefore not too much could be done about it, except for, perhaps, some relaxation techniques for the pelvic area.
I was so, so wrong! The endometriosis pain research tells us is that:
“endo” has complex pain mechanisms, including increased sensitivity of your nerves (“alarm system”) to protect you;
pain can come back after the lesions are removed and there are no new lesions in sight;
there is no clear-cut association between the severity of pelvic pain and the stage of endo or site of the lesions.
Now, what is this story about the “alarm” system and increased nerves sensitivity? Does it mean I will have to live with it forever? Is neuralgia medication the only treatment available?
Not necessarily.
“With many types of pelvic pain, there are so many issues that may set off the alarm system, including hormonal imbalances, emotions, stress, subtle infections, foods, genetics and more. Although it’s human to want to know the exact cause of your pain, it may be difficult to narrow it down to one factor”.
(Why Pelvic Pain Hurts)
It means that you might need to change your ideas about pain, and that’s where the neuroscience of pain education can be a game-changer. Don’t be put off by the word “neuroscience”, as we can explain it in plain terms!
Let’s start with the basics of how pain works:
Pain is a complex phenomenon that involves a wonderfully complicated knot of what happens to your body (biological aspect), what you believe, think and do (psychological aspect), and the ways you interact with your environment (social aspect). All three aspects are important!
The modern neuroscience of pain teaches us that the tissue damage and the level of pain do not correlate 1:1. Pain does not always mean “damage” or “injury”, and more pain does not mean “more damage”.
You don’t have “pain” receptors, you have danger receptors that give information to your spinal cord and your brain – who in their turn decide, whether to turn this information down or not (the latter will result in pain).
Pain is always about protection (think of an alarm stopping you from doing what you’re doing so that you don’t damage yourself more!), and sometimes it becomes overprotective (think helicopter parenting!)
In case of persistent pain, like the pain that can come with endometriosis, fibromyalgia, or even chronic lower back pain, your danger transmission system has become very sensitive and transmits more and more “danger” messages. Your nervous system, bombarded by these messages, “decides” to turn the alarm (pain) up. If this was ever explained to you by your doctor or a pain specialist, they might have used the words “central sensitization” or “neuropathic pain”.
Now, did I use all those words to say “It’s all in your head”?
Nothing can be further from the truth! I am saying that pain is a very complex and personal experience. Don’t allow anyone to dismiss your pain complaints or pretend they know better about your pain levels! In other words, pain is like a borsch: real, complex and very personal.
So, what is the action plan to regulate the hyper-vigilant alarm system down?
Know your pain: understanding how pain works will already ease some fears and give you hope. Education is therapy.
Start observing how your pain levels may change depending on the context (your stress levels, when you are doing something you love or hate, what you are thinking about, who you are with, the things you hear people say …). Make a list of things and life events that make you feel in safety or in danger, and how these feelings influence your pain levels. You could use one of the specially developed workbooks to be guided through this process. Once you know your pain context and your “danger” factors, start actively introducing more “safety” factors into your day: while there will be “danger” triggers you won’t be able to change or avoid, you still can influence the overall balance.
Make a plan that involves some kind of movement: pick something that you enjoy doing or what is very important to you. Walking, gentle stretches, dancing .. Find out how much you can cope with right now without a flare-up, and start with the amount of activity that feels safe to your nervous system. Gradually start doing just a little bit more every time: you need to outsmart your protective nervous system.
Because the pain associated with endometriosis is complex, you might require a group of trustworthy professionals to help you live better: those who give you a sense of partnership, who are confident people can make their own choices about treatments and remains supportive irrespective of what is chosen.
Extra to your medical team and care, this can include a pelvic health physiotherapist, a nutritionist or naturopathic doctor to optimize your diet, a pain education provider, gentle pelvic movement practices and mindfulness practices.
In my roles as a Certified Feldenkrais® practitioner and pain education provider, I can cover the last three points:
gentle pelvic movement can be explored during verbally guided group classes (Awareness Through Movement®) or within individual hands-on sessions (Functional Integration®), and
these can be also considered mindful movement practices, or as some people call it, “meditation for your pelvis”;
in terms of pain education, it helps you to know how pain works, what can be involved and how/when you can influence this process and be in charge, as well as decrease your fear of pain.
While pain is a normal part of the human experience, being in pain regularly or constantly is not normal: just don’t give up and ask for help!
Sources:
Endometriosis and the Science of Pelvic Pain: Podcast with Amelia Mardon
The cost of translational gaps for people with pelvic pain
Painful Endometriosis Could Hold Clues To Tissue Regeneration, Scientist Says
Living well with chronic pain: a classical grounded theory, BL Thompson 2018
Association between endometriosis stage, lesion type, patient characteristics and severity of pelvic pain symptoms: a multivariate analysis of over 1000 patients (2007)
Peripheral changes in endometriosis-associated pain (2014)
Endometriosis is associated with central sensitization: a psychophysical controlled study (2003)