Endometriosis-Associated Pain

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Pain with endometriosis is complex and may be due to nociceptive, inflammatory, or neuropathic mechanisms. There are different reasons why endometriosis can cause pain (simplified for this post and not all listed), so the reason(s) for my pain can be different than yours. There’s also co-conditions we can have which can cause pain.

Endometriosis pain fun facts

• The NHS listed endometriosis in the top 20 most painful conditions that a person can suffer.
• People with endometriosis have a range of pain from none to mild to moderate to severe. Whether we have a little pain or a lot, our pain is valid.
• Pain can be in various places like your back, legs, lung, shoulder – it will depend on what’s going on in the body, where the endometriosis is, etc, but people with endometriosis often don’t just have pelvic pain.
• Pain can happen anytime of the month. For many of us, there is a huge uptick in pain at our periods, but not for everyone. You don’t need period pain to have endometriosis.

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

• nerve involvement
• neurogenic inflammation/ (neuroinflammation)
• adhesions
• hormones
• inflammation
• lesion type
• lesion location

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.