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Remember, this is educational information only and not medical advice (and I am not a doctor nor an expert on endometriosis). Always check with your qualified medical professional before making any changes to your treatment plan.
There are many reasons why we can have pain when we have endometriosis
- the endometriosis lesions themselves, which are often innervated (have nerves). They lesions can also inflame and cause bleeding and injury in the surrounding tissue. They can also be located on or near a nerve, irritating it.
- adhesions, organs fused together, and distorted anatomy.
- hormones – these can drive endometriosis pain and inflammation through various physiological processes, and endometriosis lesions themselves can make their own estrogen.
- and more
There are also many drivers of pelvic pain
This means that even after excision, we can still have pain if we don’t treat the other sources of pain. There can be many different causes, from gynecologic, musculoskeletal, urological, gastrointestinal, psychosocial, and more.
Adenomyosis, pelvic floor dysfunction, painful bladder syndrome and other co-conditions can contribute to pain.
For some people, central sensitization and/or an upregulation of the nervous system can cause continued pain even after endometriosis lesions are excised. BUT this is a nuanced topic, so a few important notes on this:
Central sensitization is being used as another common way to gaslight and dismiss patients. Endometriosis patients are being told: “It must be central sensitization!” and being referred to pain clinics, without being offered excision surgery to remove endometriosis lesions that are actively causing them pain via biological “injury” to the body (in the various ways I listed above). Too many patients are told to work on their pain catastrophizing and rumination, when what they actually need is to have their true, biological pain generators addressed. Their pain is dismissed as central sensitization without the doctor even doing a work up on them to see if they meet the criteria for that diagnosis!
For some (not all) people, addressing their central sensitization or doing pain reprocessing therapy post excision can be a key to getting out of continued pain. In these cases, the patient may need to work with their doctor on various methods to calm and quiet this upregulation of those systems. However, it’s also true that the skill levels among surgeons vary, so unfortunately, it’s likely that not all patients with continued pain actually had expert, complete excision. More on this on my page Addressing Pain Post-Excision for more info.
It’s really important to investigate all potential causes of pain and not be quick to blame everything on central sensitization. This also applies to blaming continued pain on endometriosis post excision as well.
Biopsychosocial approach to pain
Apart from addressing my pain on a biological level, I’ve been looking for ways to cope with my chronic pain of 17 years, especially after I got gastritis and could no longer take NSAIDs, which were the only medication that even touched that backbreaking pain I got during my flares. These past few years, in order to survive my pain flares, I’ve been taking a biopsychosocial approach to my pain, which is how pain is now viewed by researchers. Bio = biological, psycho = psychological, social = social.
Our pain experience is influenced not only by the biological, but also by psychological and social factors, such as our support system, our fear, and our thoughts (such as ruminating, catastrophizing, pessimism) about the pain. At the same time we are addressing the biological side of endometriosis with our doctor, we can also learn ways to address the psychological and social sides.
By the psychological side, this isn’t to say that we caused our pain or our pain is our fault. It’s not our fault! Many of us with endometriosis have faced years of gaslighting and dismissal from doctors to loved ones telling us that our pain is in our head or psychosomatic. It’s not! What is meant by psychological factors are things like our catastrophizing, our mood, our coping mechanisms, our memories and perception, and more, and how these can influence our experience with pain.
The mind-body community
The deeper I’ve gone into pain science, the more I come across is a false idea that all pain can be cured by learning to rewire the brain. Some people with mind-body pain (pain not caused by any structural damage) have indeed “cured” their pain with pain reprocessing brain techniques, because their pain solely stemmed from the way the brain was sending signals.
However, now many of us are being wrongly painted with the same brush. Complex pain patients or undiagnosed endometriosis (and other pain) patients are being fobbed off as having mind-body syndrome and not getting the diagnostic explorations/workup, nor pain medications, that they desperately need and deserve.
This really frustrates me. Yes – all of us could benefit from getting out of fight or flight, calming our central nervous system, catastrophizing less, etc. These are helpful human practices that can put a person more at ease in their life and body experience. But not all patients will get out of chronic pain by doing them, because many of us need the biological side of our pain to be treated. In my own case, this involved both an excision surgery and treating SIBO.
Improving my pain experience
Prior to excision, I was terrified of my periods which had me screaming and writhing in pain for several hours at its onset each month, and then bedridden in excruciating pain for several days after that. I had severe trauma around my period after a decade and a half of surviving what what absolutely unbearable, with no month being easier than the last in spite of how many times I lived through it. In fact, as time went on, the pain only worsened as my endometriosis progressed. Once I could no longer take NSAIDs, I knew if I was going to continue on this earth I had to find a way to improve my pain experience.
Part of this was looking for pain medication with my doctor, although nothing that I tried did anything for the pain.
Part of it was looking for distraction techniques like rocking, chanting, mesmerizing art movies (huge fan of Louie Schwartzberg’s moving art!), guided visualizations
Part of it was trying to make my home a more comfortable place to get through flares: comfortable blankets, a dog bed in the bathroom (for me to be close to the toilet but comfy!) heating pads, chamomile tea on hand, etc.
And a huge part of it was changing my relationship with my pain. Pain always makes me feel so helpless, terrified, and overwhelmed, so I worked on ways to feel more in control and to be less emotionally burdened by my pain:
- to think less about my pain when I’m not not in a flare
- to no longer be afraid of my pain
- to trust that I would get through the worst of the pain
- to be better able to cope when the pain was at its highest levels
- to identify less with the pain (it’s just pain vs “my” pain)
- to stop hating my body and myself for the pain
- to stop blaming myself or thinking that it’s my fault or that I deserve my pain for “being a bad person”
All of this immensely helped my mental health and made those monthly days of agony survivable until I could access excision almost 2 years after stopping the NSAIDs. They didn’t lessen the pain, and between my pain and the rest of my symptoms, I was still barely hanging on, but changing my experience with pain absolutely helped me to hold on. And interestingly, it also prepared me to deal with the emotional turmoil of a new diagnosis of MCAS that I got post excision.
The Curable app
Curable is a pain psychology app. I used it for a year and I wanted to give my feedback on it, because I know a lot of people with endometriosis are curious about it. I liked it and recommend it to others, but I also know that there are people who don’t like it and that’s ok too. Not everything is for everyone – it helped me in a time of my life when I needed it. I used the app for a full year, and decided not to renew after that because I felt like I had had a lot of emotional healing and was ready to move onto something else.
I used Curable post excision. Prior to excision, when I was learning what I wrote in the list above, it was through books on mindfulness, Vipassana meditation, practicing self-compassion, and other techniques. I was unaware of pain science at that time.
I came across Curable post excision, once I no longer had my excruciating pain flares (although I still had full body fibromyalgia pain which had lessened since excision). What I was dealing with then was MCAS symptoms, and I suspected that I had a wound up nervous system and was in a constant state of hypervigilence and fight-or-flight that was exacerbating my symptoms. I also knew that when I was in my early twenties, I had been very anxious and tense, and learning to find more calm in my body had helped lessen my bladder and bowel urgency/frequency, which at that time were having a detrimental impact on my life.
What I liked
The lessons are short, like 5-20 min, and they became something I could turn toward during moments of high symptoms. I would push the panic button and feel like I had support. The app would push me to breathe deeply. I turned to its guided visualizations during nights of insomnia, anxiety attacks, racing heart, etc.
The pain science was interesting, and there was a focus on getting you out of heightened alert. Even though I wasn’t using it for pain specifically, I found the info on how perfectionism, repressed emotions, and anything that makes you subconscious feel like you are in danger to be very helpful. I had a lot of self exploration which helped me get out of my constant fight-or-flight. For several years, I’ve been doing activities to wind down and relax my overactive nervous system, to try and get into a state of relaxation and out of hypervigilance. Activities like yoga, qigong, meditation, and painting to get into a flow state have really helped my mental health as well as some of my physical (non pain) symptoms. But for me, it wasn’t until I did guided meditations, journaling, and other exercises specifically aimed toward chronic pain (and in a broader sense, calming the nervous system) that I saw a real breakthrough in getting out of fight-or-flight. I now understand what kinds of thoughts and tendencies trigger it in me, as well as my window of tolerance and how to bring feelings of safety back to myself when I’m triggered.
What I didn’t like
I didn’t use the app for endometriosis pain, but of course each lesson also made me think about it.
It’s really important to know the app is aimed more toward people who have central sensitization or mind-body pain – basically pain in people who have no structural damage causing their pain but rather it’s a sensitization of the system or misfiring of the brain that’s causing their pain. The Curable message is that you need to (once you get checked out by a doctor) believe that your pain is not from any physical source in order to successfully do pain reprocessing. For example, some people are able to use Curable (or mind-body medicine or pain reprocessing) to get out of their chronic back pain or other types of pain. Those of us with endometriosis know that it can be dangerous to accept that our pain is not from any physical source – that’s what doctors told us for years as they dismissed us when all tests were normal. This is one of the main reasons why it takes an average of 8 years to diagnosis, because doctors don’t recognize the symptoms of a very real disease. It’s also true that due to racism, sexism, ableism, classism, and more systems of oppression, depending on our identities, it can lead to outright dismissal and denial of care that we deserve and need – someone with different identities may actually get diagnosed and treated while the same doctors actively ignore us.
So I want to encourage endometriosis patients using this app to keep looking for expert care and causes for your pain. No amount of pain reprocessing or downregulating your central nervous system can take the place of a surgery for a kinked bowel or separating organs that have fused together. Whenever I heard the message that the pain was not caused by a structural source, I reminded myself that endometriosis does cause structural damage and this app is being used by people in a different situation than I am. That I am using it for a bigger picture of calming my fear response around my symptoms and having a better emotional experience during my flares. And if it ended up helping my pain/symptoms, then cool. And if it didn’t, no problem.
I also stopped listening to their podcast after several episodes because those healing stories were not relevant to my situation.
Update: 3.5 years after my excision surgery, I’ve finally become chronic pain free!
It still feels shocking and unbelievable to me, but I’ve been pain free for over a full year. I wrote about the process here: After 20 Years, I’m Finally Chronic Pain Free
For more info
- My Philosophy on Treating Pelvic Pain Patients – from Pacific Endometriosis and Pelvic Surgery
- Chronic Pelvic Pain: The Role of Central Sensitization by Kenneth I. Barron, MD – PDF download from the CEC
- Why Calming Down The Nervous System Can Help Endometriosis – Written by Pelvic Physiotherapist Shan Morrison. This specific article is helpful, but I do not endorse the endometriosis education on their website.
- Pain Relief after Excision of All Endometriosis – from the Center for Endometriosis website.
- Pain – It’s complicated – From Nancy’s Nook. They have an entire section about pain on their website, definitely check it out!
- Curable – an online pain psychology program that “helps you understand why you have pain, why it persists, and guides you through you science-backed strategies to help you heal.” Not everyone who uses Curable likes it, and that’s ok. It’s important to know that not all of the education is relevant to endometriosis – a lot of it is towards people who have chronic pain with no structural tissue damage. Endometriosis does cause structural damage. Keeping this in mind, Curable has helped me find safety in my body, calm my fear response to the pain, and have a better emotional experience during my flares.
- The Way Out: A Revolutionary, Scientifically Proven Approach to Healing Chronic Pain – Book by Alan Gordon
Related Podcast Episodes
- How does Pain Happen in the Body (coming soon)
- Why Does Endometriosis Cause Us Pain? (coming soon)
- Endometriosis and Inflammation (coming soon)
- My Experience with Pain Psychology (coming soon)