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Chronic Pain

There are many reasons why we can have pain when we have endometriosis

  • the endometriosis lesions themselves, which are often innervated (have nerves). They can also be located on or near a nerve, irritating it, or have neuroinflammation.

  • 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.

  • inflammation. Apart from the inflammatory mediators the lesions can cause, they can also inflame and cause bleeding and injury in the surrounding tissue.
     
  • See Endo Biology for more details about how endo can cause pain.

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.

Co-conditions

Adenomyosis, pelvic floor dysfunction, painful bladder syndrome and other co-conditions can contribute to pain.

Central sensitization

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:

On one hand, 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 may be 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!

On the other hand, for some people addressing their central sensitization or doing pain reprocessing therapy, especially 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 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 – it’s true that all pain stems from the brain. I also believe that all of us could benefit from regulating our nervous system and expanding our window of tolerance (as in, being able to move between the parasympathetic and sympathetic nervous systems and not get “stuck” in or too easily triggered into fight or flight), finding safety in our body, catastrophizing less, etc. These are helpful human practices that can put a person more physically and emotionally 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 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 was 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. When in a flare, I started to ask myself: What do I need? How can I support myself right now? What helps? 

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 during high pain 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 the new and unbearable MCAS symptoms that I got post excision.

The Curable app

Curable is a pain psychology app. From their website: “The Curable app provides evidence-based chronic pain lessons in your pocket. It uses a combination of pain science education and research-backed techniques to address pain from every angle.” I used it for a year and give my feedback on it here.

Update: 2.5 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 3 full years! 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)