There are many reasons why we can have pain in the body – from the endometriosis lesions themselves to hormones, inflammation, pelvic cross talk, central sensitization (also known as nociplastic pain), pelvic floor dysfunction, co-conditions, and more. There are also many drivers of pelvic pain, which 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 can 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. Those are a few common drivers of pelvic pain, but there can be many different causes, from gynecologic, musculoskeletal, urological, gastrointestinal, psychosocial, and more.
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, 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 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) on 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. I’ve been using 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 program didn’t lessen the physical sensation of my endo 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. It also taught me to recognize how my stress reaction/fear of the pain puts me into fight-or-flight mode (which ultimately does affect some of my endometriosis symptoms, my bladder symptoms, and mast cell symptoms).
Update: 3.5 years after my excision surgery, I finally became chronic pain free! It still feels shocking and unbelievable to me, but I’ve been pain free for almost 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 very 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 have a better emotional experience when I have pain as well as feel more connected to my body.
- 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)