Endo Myths: Pain

One of the most widely discussed symptoms of endometriosisis pain, but does that mean that if you don’t have pain then you can’t have endometriosis? Not at all, but it is a very common misconception.

There are online support groups set up on platforms such as facebook, where people share their experiences and I believe the intention forthese groups was to prevent the feeling of isolation that is so common whendealing with endometriosis. Unfortunately, from the groups that I am in, it seems like some of these groups have become rather negative places to be. It is more like a competition of who has it worse, rather than the words and experiencesof others providing help and comfort to those currently struggling. I saw onepost, where a young girl said that she had been experiencing a lot of symptoms that are associated with endo, but doesn’t really get any pain. Instead of getting support, this young girl was told by many strangers on the internet that there was no way she could have endometriosis because pain is the common symptom amongst all those who are diagnosed. This is categorically not true.

One thing that is important to remember when discussingpain, is that it is not a measurable variable, and everyone has a different tolerance to pain. What might be unbearable to one is tolerable but uncomfortable for another. Pain is usually one of the symptoms that alerts people to something being wrong, and that is why they start seeking answers for it. But, if your pain tolerance is so high, or you just don’t experience any pain, it must be so damaging to be told not only by doctors (something lots of us experience) but also by your peers, that there is nothing wrong with you when you know there is. These people who understand what it’s like to be told that there is nothing wrong with you when you know there is, are behaving in the same way as they complain about being treated. So, in the spirit of international women’s day, lets support each other and make educated and kind responses to questions.

Pain doesn’t just refer to period pain as well. It can be joint pain, digestive pain, pain when going to the loo, a general feeling of dull aching. It’s a very versatile element of endometriosis. Pain does not correlate to the stage of endometriosis you can be diagnosed with either. For example, I have stage IV endo, but this is due to the quantity found and the locations it was found in. I do experience pain, but there are accounts I follow on instagram who have a stage I/II diagnosis but report their pain to be much worse than I generally experience (but I do have the odd day that absolutely wipes me out and I’m pretty much incapable of doing anything). Pain also does not correlate with the location of endometriosis found. When I had my surgery, I experienced really bad post op pain in my shoulders. It was unbearable even to breathe, moving was out of the question. I was experiencing something called referred pain. This is where your nerves feel the pain in a certain area, but instead of letting your body and brain feel it in that area the pain signal is sent to a different nerve and pain is experienced there instead. I was feeling shoulder pain, because the gas used to inflate my abdomen during surgery irritated my diaphragm and referred the pain up to my shoulder.

There are all sorts of quotes about pain, that it is weakness leaving the body *insert eyeroll here*, or that it makes you stronger but I feel that most of these quotes were not written by people who experienced pain so bad that it renders you immobile. However, one quote I agree with is that pain is there to let us know that something is wrong. It is our body’s way of letting us know it needs help, and it affects everyone differently.

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