There is so much that goes into why people hurt when they have endo. This is one of the reasons why oftentimes, feeling better takes a lot more than one method of treatment. The following is an attempt to explain what we, the endo patients, have learned.
If you are a person with endometriosis, let’s start from the very fact that you have it. (Going into how you got it is a whole ‘nother conversation.) We all get endo in different places on our bodies with differing levels of intensity and differing levels of pain and other ways it affects us. So in this vague story, you have endo and it is causing you lots of problems.
Endometriosis loves estrogen. It is an estrogen junkie. It thrives on extra estrogen. Studies show that endo makes its own estrogen, too (perhaps in a motor home in the desert… jk). So when your body has too much bad estrogen, the endo thrives and ruins your life. How can you (with a discussion with your physician, of course) knock down some of that extra estrogen? A few ways. The most obvious is to try certain birth control options that are meant to regulate estrogen. This is often the first thing doctors try when they suspect you may have endo. Sometimes, this works well and a person is on her merry way. Other times, it either does not work well or does not fit in with the patient’s goals or lifestyle (she may want to become pregnant or she does not like the way birth control affects her, for instance).
Another way a person can try to regulate estrogen is through diet, supplements, and lifestyle changes. Some foods introduce more estrogen to us. One of these foods is soy (soy milk, edamame, tofu, etc.) Some foods and supplements fight extra estrogen, like broccoli, brussels sprouts, and DIM supplements (which is basically just a concentrated version of what is in those veggies). Environmentally, things can introduce bad estrogen to us, too. Certain plastics, for instance. When you hear about dietary changes to help with endo, the idea of managing hormones naturally is often a part of that.
The other way people can use diet to try to help with endo, is that dietary changes can help manage the inflammation that occurs with the condition. The angry tissues, lesions, and scarring are all exasperated by inflammation. When we put foods into our bodies that our bodies are having a hard time with, the sick tissues can hurt worse. Chronic inflammation is never good. So what can we do about that?
Many people are finding that food intolerances (somewhat different than allergies) are making their bodies unnecessarily “angry” and contributing to inflammation. Many people are finding that when they nix these foods, they feel much better. Common culprits (although we are all different) are gluten, dairy, red meat, caffeine, alcohol, and eggs, among other things. For some, corn. For some, rice. This is one of the good reasons to keep track of how you feel throughout the day every day and what you eat. With good note-taking, you may notice a correlation. Many people have success finding the culprit when they try eliminating a certain food strictly for 6-8 weeks, then adding it back. Noting how you feel toward the end of the 6-8 weeks and how you feel within a couple of days after adding it back in. If there is no difference, maybe it isn’t a good lead. If some part of your body (or the whole thing) feels better without the food and awful with it, you may be on to something. Again, some supplements can help with inflammation too. The idea here is to give your body whatever it needs to have calm, happy tissues and remove things that aggravate it or make it work harder. It’s not always helpful for everyone, but it is something to look into if you are not feeling good.
Bad tissues/ scarring
The next parts of endo that can make you feel rotten are the lesions and adhesions themselves. It is true that the extent of the endo a person has is not directly related to the grief the disease causes. What does that mean? It means a person with stage 1 endo might have no pain or might have excruciating pain, and a person with stage 4 endo might have no pain or excruciating pain. Every person’s experience is unique. This story, however, assumes that the endo is giving you all kinds of problems, regardless of the stage. The fact is that lesions themselves can cause pain. Adhesions themselves can cause pain. Eating well and not having too much estrogen and fighting inflammation can be helpful and great, but it will not undo a fallopian tube or bowel that is scarred into a kink. Reducing inflammation might be all one person needs, but might only be a good supplement to what someone else requires. The only thing that can remove the actual disease is liberal excision surgery. The only thing that has a chance of freeing organs is surgery. The key here is to find an endometriosis excision specialist that has proven to be excellent. Why? Repeat surgeries makes for a chance of more scar tissue. We certainly do not need more scar tissue.
The next thing a person might need to try is pelvic floor physical therapy. If you sprain your ankle, you walk on it differently. Your body’s muscles tense up and do whatever it automatically thinks is best to protect the ankle from further pain. Because of this, you walk funny and might end of experiencing a sore knee and hip because of it. The sore hip makes the limp worse and throws off your back. Your back affects the neck, and gives you a headache. The whole bodily chain-reaction begins with an injury, but some of the problems may persist even after the ankle heals. The muscles in the pelvic region are similar. When a person has endo (or other painful gynecological issues), the muscles in that group involve one another into a painful chain reaction similar to what happened up the body in the story about the sprained ankle. The muscles tense up and cause pain, even when the root issue may be better.
It is for this reason that your doctor may refer you to a pelvic floor physical therapist. This kind of therapist with use various techniques and send you home with homework to try to relax the muscles that are so used to being on high alert. They retrain the muscles to be calm, strong, and essentially “not scared”. Successful pelvic floor physical therapy can cause a decrease in pain, and help restore the body.
These ideas are ones that are not inherently reliant on medications and work to hopefully restore the body’s functions (including reproductive function). These ideas aim to get to the root of problems instead of turning off parts of the body or masking symptoms. As each person is different, has different goals, allergies, hopes, dreams, fears, beliefs, et cetera, the treatments for each person will be different and simply must be started under the supervision of a trusted physician. Have any of these (or a combination of them) helped you to feel better?