When I posted my story about living with endometriosis, I had no idea it would garner such a huge response. I have been overwhelmed by the support, curiosity, and pain that my readers have shared with me. Several of you have emailed me and asked questions about what causes endometriosis. More importantly, you want to know what to do to manage it. Yes, you can find information online, but it can be hard to sift through what works and what’s just out there to make money (*ahem* Midol). I’m not a medical doctor, and I haven’t done any formal, academic research. What I am, however, is a long-time survivor of endometriosis and an avid learner. I’m going to share everything I know, based on personal experience and years of learning.
Endometriosis is a painful disease in which the the cells that line the walls of the uterus (endometrium), attach themselves to other organs of the body. Endometriosis commonly attacks the ovaries, bowels, and/or bladder. It can grow on other organs as well –even the diaphragm and/or lungs. When it decides to make its home on the ovaries, cysts develop. (If you experience sharp, radiating pain on your left or right side in the middle of your cycle, you should read about the different types of ovarian cysts here). This stray uterine tissue behaves in the same way as the endometrium does inside the uterus. During a period, it does everything it can to get out of the body. The problem is that there is no mechanism allowing it to leave. Instead of exiting as it would during a period, it becomes very inflamed. You’re left with trapped, angry uterine cells attacking the various organs of your body. The cramping you feel with endometriosis is not necessarily just the uterus. It is likely that your other organs are acting up.
The Miserable Symptoms
The most obvious symptom of endometriosis is very painful periods. Endometriosis takes the term cramps to a whole new level. The cramps are often accompanied by nausea, vomiting, and the tendency to faint. If you have endometriosis, you may also have extreme back and/or leg pain during a period. For many, the pain is understandably accompanied by extreme anxiety and even panic. Over time, the endometriosis causes scarring on the organs. It can cause the organs to stick together, which can, tragically, lead to infertility. Sufferers of endometriosis often have pelvic pain during intercourse, using the bathroom, or just existing. Sometimes, endometriosis causes only mild cramps. It can disguise itself as IBS, causing gastrointestinal distress.
Personally, endometriosis has a way of bringing out OCD tendencies, as I tend to get very superstitious about management of endometriosis pain (and I know I’m not the only one). In the interest of oversharing, I’ll also tell you about my unusual symptom: I get severe pain radiating from underneath my right ribs all the way up to my shoulder and around my back. It’s the phrenic nerve, which is usually associated with the gallbladder. In fact, I get this pain about 12 hours before my period, and it’s my cue to start taking NSAIDs. My doctors have always been baffled by it, but I have also read about other women dealing with the same thing. The point is this: Endometriosis can cause bizarre, seemingly unrelated symptoms in addition to the more common cramps.
You can’t get an official diagnosis of endometriosis unless you undergo a laparoscopy. In this procedure, a surgeon uses a small camera to view your organs. Some doctors attempt to treat the condition while they’re in there. In case you’re curious about how it looks, here is a video for your amusement. If you’re easily grossed out, don’t watch it. In the video, you can see the adhesions that have formed between the organs. You can also see how endometriosis causes stray bleeding and pain.
What Causes it?
There are countless theories about what causes endometriosis, ranging from the medical-but-vague to hippie-woo-woo explanations. Here are a few explanations that I’ve come across:
This is the most popular explanation. During retrograde menstruation, the endometrial cells allegedly flow backward, back into the body, rather than exiting normally during a period. Some blame tampons, sex, or weird yoga positions. Others aren’t sure what may cause retrograde menstruation. I happen to think it takes something more pervasive than an upside down yoga position to cause endometriosis. This theory also leaves me wondering how endometriosis can grow on non-reproductive organs, seeing as retrograde menstruation mostly involves the fallopian tubes and ovaries. While retrograde menstruation seems to occur in women with endometriosis, I’m still wondering what causes this to happen in the first place.
Bloodstream or Lymphatic System
Perhaps the bloodstream or lymphatic system, by way of some unknown mechanism, manages to carry endometrial cells from the uterus to other parts of the body. At that point, they theoretically attach to the organs and take on an evil life of their own.
The Embryonic Cell Theory, or Metaplasia
I find this one fascinating. The idea here is that certain embryonic cells misbehaved in utero. That is, some of the uterine cells ended up in the wrong spots. Another take on this is that some adults still have cells that have the ability to morph into various types. This would explain endometriosis on random parts of the body, like the brain. Yes, endometriosis has been found on brains.
It has been suggested that women with endometriosis have either autoimmunity, in which the body overreacts to certain triggers and attacks itself, or under-active immune systems. Either way, I take this immunity idea seriously. My genius hero angel surgeon, Dr. Theresa Stigen, suggested this as a reasonable explanation. I’ll write more on this in my next post about treatment options.
Oh please. Don’t even try to tell me that endometriosis is caused solely by wearing nail polish or using a little hairspray. I don’t buy it. I’m sure the environment plays a part, and I know that toxins are, well, toxic. But I’m not sold on this as a main cause.
Gluten and Other Food Irritants
Food is supposed to stay contained within your gut. Gluten has the ability to cross the gut barrier and enter the bloodstream. From there, it can wreak havoc on any organ of the body. It’s important to note that gluten is not the only food that can do this. Yes, it’s in vogue to go gluten-free right now. But many gluten-free substitutes as well as other foods (dairy, legumes, sugar, and vegetable oils) can be equally or more problematic, depending on the person. I don’t know if gluten is the real (or only) culprit behind the endometriosis epidemic. Personally, I’ve chosen to avoid it.
Many women who have endometriosis, myself included, have also noted that their mothers, sisters, aunts, and grandmothers have it too. It seems to run in families. This still doesn’t explain the cause behind it, but perhaps identifying the trend may someday help us demystify endometriosis.
Past Life Trauma, Retaining Negative Emotions, or Other Woman-Blaming BS
I’ve visited alternative doctors who have tried to tell me that the pain I was experiencing was caused by some sort of emotional trauma or refusal to “let go”. Many of them told me that I was just refusing to release old pain, and that If I tapped my forehead seventeen times while saying, “Release!” and imagining butterflies in a field of white light, it would all disappear. I’ve been told that my chakras are out of line and that if I banged a gong and allowed it to resonate long enough, everything would be better. Many women have been told that the pain is all in their heads –that they are overreacting to a normal level of pain.
All of this is insulting and ridiculous. Trust me. I gave it a shot. I’ve had an open mind. This ain’t it. Endometriosis has a scientific explanation. We just don’t totally understand it yet. While emotion obviously plays into the pain cycle, I have a problem with diagnoses that essentially blame the woman for failing to “let go.” Many of these same doctors encourage women to avoid taking evil pain medication and to simply meditate instead. Conveniently, they also tend to feel strongly about expensive supplements and acupuncture treatments.
So there really is no definitive answer… yet.
Right. Nobody can really give the final word on what causes endometriosis.
Next time, I’ll write about different treatment options and what has and hasn’t worked for me. Until then, I really want to hear from you. Please leave a comment, contact me here, or reach me on Facebook. Do you have endometriosis? What has it been like for you? How have you treated it? It’s time to speak up!