What is Endometriosis?

Happy Endometriosis Awareness month! In my day-to-day practice, patients often ask me about endometriosis. Even with the mass of information readily available at our fingertips, there are still some misconceptions and misunderstandings.

Endometriosis is where tissue that usually lines the inside of the uterus(the tissue that bleeds during a period) grows outside the uterus. This means it is found on other pelvic structures, such as the fallopian tubes, the bladder, the pelvic side wall, and the intestine –  it can be all over the place. It can also only be one little spot way up under the uterus. It is a pretty common situation. I looked up some stats, and there are over 200,000 cases annually in the US.

What causes endometriosis? There is a cool word in medicine, one of my favorites, “idiopathic.” Idiopathic means we don’t know. We don’t know how endometriosis happens. Several theories are beyond the scope of this discussion and would be dull for the non-cellular biologist.

What are the common endometriosis symptoms? Pain. Endometriosis causes pain. The severity of the symptoms- the amount of pain- does not necessarily correspond to the amount of disease. I’ve seen a patient with many endometriosis lesions throughout the pelvis and very little or even no pain /symptoms. Conversely, the pain can debilitate a patient with one small, obscure spot. It is truly bizarre!

When I mention “I’ve seen” that means surgically, with laparoscopy. Laparoscopy is a minimally invasive surgical technique where, under general anesthesia, a small incision is made, and a fiberoptic scope is placed through the abdominal wall. Then, I can see the tissues, surfaces, and organs inside the abdomen. Make more small incisions, and now I can place more instruments, operate on those surfaces, etc. This technique has been around for decades. Robotics is the latest, greatest iteration in the minimally invasive/laparoscopic surgical world. The definitive diagnosis of endometriosis can only be made surgically. The diagnosis can be presumed with symptoms and imaging, such as MRI and ultrasound. Direct visualization and tissue diagnosis are the gold standards.

Okay, enough about that. Another “symptom,” perhaps… infertility. What’s the scoop with endometriosis and infertility? Well, it is multifactorial, but it can cause structural issues with fallopian tubes, which can impact tubal function(i.e., block the tubes). There is much more to fertility issues and endometriosis. And again, nothing is absolute. A pelvis with extreme endometriosis can get pregnant. And sometimes, very subtle endometriosis might hamper a person’s ability to conceive.

So now, what do you do if you have endometriosis? It can be treated! And needs to be if it is impacting your life. Like the tissue inside the uterus, endometriosis responds to the hormones your ovaries produce. If we manipulate the hormones, we can modulate the endometriosis and hopefully impact symptoms. A tried and true common treatment is birth control pills. They trick your ovaries into hibernation–the ebb and flow flux of estrogen and progesterone is completely blunted. Endometriosis needs the estrogen your ovaries produce to flourish. If we shut down the estrogen, endometriosis will go away without stimulation. Several additional medications are even more potent to stop the ovaries from producing estrogen. These are called GnRH agonists. Lupron was one of the first used for this purpose. Now there are combinations of GnRH agonists and add-back hormones. There are a lot of patients whose lives are significantly impacted by endometriosis and its symptoms. Big Pharma is on it – medical therapy for endometriosis has come leaps and bounds in recent years.

Surgery is another avenue for treatment. Essentially, I can remove endometriosis with the laparoscopic instruments I described earlier. Typically, when I do a laparoscopy for pelvic pain and diagnose endometriosis, I remove all of the endometriosis I can see. Then, subsequently, we will treat with the medications we discussed, and we can get a prolonged, if not forever, symptom-free interval.

One last comment. There is a familial relationship with endometriosis. If one of your relatives has it, you have an increased chance of having endometriosis. Again, nothing is absolute! I said increased risk! While seeing patients in the clinic, I sometimes hear: my mom and my sister have it, so I do. Maybe, possibly! Somebody once told me, never say always!

Thanks for reading all of this. It’s only a brief little blurb; it’s not meant to be comprehensive! Endometriosis and pelvic pain syndromes are profoundly complex multiple organ-system entities. Bottom line, if you are having symptoms/ pelvic pain and these symptoms are impacting your life adversely, talk to your healthcare provider about it or seek out a gynecologist and discuss your issues with that person.

Darren Housel, M.D.