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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 in the body
- the endometriosis lesions themselves
- pelvic cross talk
- central sensitization (also known as nociplastic pain)
- pelvic floor dysfunction
- 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.
- Adenomyosis is also a common cause of pelvic pain.
- Some other common sources may be the pelvic floor and/or bladder, which pelvic floor therapy and other techniques may help with.
- A person may also have central sensitization and/or an upregulation of the nerves that can continue even after endometriosis lesions are removed. In these cases, the patient may need to work with their doctor on various methods to calm and quiet this upregulation of those systems. For some people, addressing their central sensitization can be the key to getting out of pain, especially post excision. However, it’s also important to know that central sensitization has become another common way for patients to be dismissed by doctors: “It must be central sensitization!” when actually the patient may have other pain generators that need to be addressed, a top one being incomplete excision surgery. It’s really important to investigate all potential causes of pain and not be quick to blame everything on central sensitization – or on endometriosis, for that matter!
Those are a few common drivers of pelvic pain, but there can be many different causes, from gynecologic, musculoskeletal, urological, gastrointestinal, psychosocial, and more.
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.
I’ve been using Curable, which is a pain psychology app, but there are also pain psychologists and pain clinics to help us take a rounded approach to our pain. Pain always makes me feel so helpless, terrified, and overwhelmed, and pain psychology programs have helped me to feel more in control and to be less emotionally burdened by my pain. The app didn’t lessen the physical sensation of my endometriosis pain (although it does for some!), but it did help with my bladder symptoms as well as help me to not going into such a dark place during a flare. I feel more in control during a flare and think less about my pain when I’m not in one. I’m no longer afraid of my pain, and I’m better able to cope when it’s at its highest levels. This has really helped my mental health.
Curable also taught me to recognize how my stress reaction/fear of the pain puts me into fight-or-flight mode (which does affect some of my endometriosis symptoms, my bladder symptoms, and mast cell symptoms). It’s only now that I’ve gotten out of a constant state of fight-or-flight that I’ve been able to truly comprehend the enormous role that having such a wound up nervous system has played in my pain and symptoms. 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 and getting into a flow state have really helped my anxiety and depression, but it wasn’t until I did guided meditations, journaling, and other exercises specifically aimed toward chronic pain that I saw a real breakthrough in fully calming my nervous system. I’ve not only gotten out of fight-or-flight and a state of constant hypervigilance, but 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.
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)