6 Things I Wish I'd Known About Endometriosis When I Was Younger

If you’ve followed my blog for any period of time, you’re likely familiar with the fact that I have endometriosis. To be honest, of all my chronic illnesses, it’s the one I feel most passionate about.

Despite being a very common condition, it’s not one for which education is exactly stellar. It’s a disease most people have never heard of. When a diagnosis of endometriosis is given to a woman, most of the time she has no idea what it is or what it means for her.

Girls in school are taught all about their menstrual cycles, proper hygiene and birth control. However, these girls often receive no education about a disease that can drastically affect not only their reproductive health, but also their future relationships and whether or not they will be able to have children. How’s a girl supposed to seek appropriate care for a disease she knows nothing about? We need to do more to educate women (and men) about this disease and proper treatment for it. Here are some facts I wish I’d learned about endometriosis when I was young.

1. What It Is

You’d think you’d be able to look up the definition of endometriosis on the internet and get the correct answer. Unfortunately, that really depends on where you look. The definition that is currently being perpetuated by those who don’t know better (a.k.a. the media, who think if they source anyone with an MD after their name they’ll get the right answer) is that it is a condition where rogue uterine tissue grows outside the uterus. This is false. Endometriosis is a condition in which tissue that is similar, but not identical, to that which lines the uterus is found in the body outside the uterus. It is biologically and histologically (at the tissue level) different from the tissue that lines the uterus.

Sadly, not even physicians who treat endometriosis can always manage the correct definition of the disease. In fact, in March 2017, the president of the American College of Obstetricians and Gynecologists (ACOG) demonstrated this in the very first sentence of his statement, “It’s Time We Talk About Endometriosis”…by giving an incorrect definition of endometriosis. If the leader of the organization that drives this field of medicine in the United States can’t even correctly define the disease in question, how much do those under him know about the disease? It certainly demonstrates a breakdown in education somewhere.

2. How Common It Is

You may have never heard of endometriosis. It’s not something that is taught in sex ed. I went through six years of pharmacy school and never heard about this disease that is the third leading cause of gynecologic hospitalizations after uterine leiomyomas and menstrual disorders.

So how common is it? Endometriosis affects 176 million women throughout the world. That breaks down to one in 10 women. How many women do you know? Probably a few hundred if you think about it, between school mates you grew up with to friends from college to coworkers, as well as family members. So if you know, say, 200 women… statistically 20 of them have endometriosis. And some of them may not know it, either.

Despite this statistic, it still takes an average of 10 years (in the United States) for a woman to receive a proper diagnosis. For me, it was 14 years from the time of symptom onset at the age of 14 to my diagnostic laparoscopy when I was 28.

3. Pain This Bad Is Not Normal

Many women are taught as young girls that with periods come pain. What that’s supposed to mean is mild discomfort. After all, the uterus is shedding the lining that built up over a month anticipating a fertilized egg to nourish. But the pain should be such that women are able to continue with their daily lives. A dose here and there of an over-the-counter pain reliever such as ibuprofen isn’t uncommon or worrisome.

Since I was taught that periods are painful and it’s just a woman’s lot in life to suffer, I really didn’t think anything of it when as a 14-year-old, I doubled over with cramps so bad I was literally unable to stand up straight. I saw other girls around me in dance class occasionally having the same type of pain. These girls were a few years older than me, so I figured the pain must be normal. Even when my pain was causing me to miss class in college and be able to eat nothing but Cheerios for a week, I thought it was normal. But severe pelvic pain, even during a menstrual cycle, is not normal. If your pain is preventing you from participating in work or school, something is wrong. While there are other causes of pelvic pain besides endometriosis, severe pain warrants a visit to a doctor.

4. Most OB/GYNs Don’t Treat It Effectively

This is something your OB/GYN is unlikely to tell you, for obvious reasons. Endometriosis is under their purview, so they should be the end all and be all for treatment, right? Unfortunately, this is not always the case.The vast majority of OB/GYNs who treat endometriosis will perform ablation. This procedure simply uses an energy source to burn off the top of the endometriosis lesions, leaving cells behind to proliferate underneath the burned tissue. This is why some doctors may even tell you that your endo will grow back. Using ablation, it almost certainly will! This is why women have double-digit surgeries. Conversely, this is likely also why some doctors will refuse to operate on a patient multiple times, telling them that “more surgery won’t help.” They’re right; it won’t help because it’s not appropriately treating the problem.

In addition, OB/GYNs may push hormonal therapy on you in the form of GnRH antagonists. These therapies do nothing to treat endometriosis. They are simply palliative and can cause severe and permanent side effects. Some women do have improvement while on these therapies, but most of the time, it doesn’t last once therapy is stopped.

5. How It Should Be Treated

One word: excision. This is the gold standard of endometriosis treatment. With this type of surgery, highly skilled surgeons cut all around and under the lesions, leaving no bad cell behind. (Think how surgeons refer to “clean margins” when removing a cancerous tumor. It’s the same basic principle.) And it’s not the tool as much as the method. Surgeons can use a CO2 laser, cold scissors, or a robot as their tool of choice; it doesn’t matter as long as they are performing excision.

6. Not All Excision Is Created Equal

That being said, this important point must be noted: just because a surgeon says they perform excision does not mean they necessarily do it well. Or that they will even actually do it.

I know several people whose surgeons have said they perform excision. But when the patient looked at her operative report afterwards, it said ablation was actually performed. In certain situations, this constitutes medical malpractice. I can only imagine this is happening because of pressure on regular OB/GYNs as endometriosis education among patients improves. Women are demanding proper care with excision, a procedure the surgeon may not actually be capable of performing. Surgically, they’re trained to deliver babies and perform hysterectomies, not spend hours un-sticking a woman’s pelvic organs from each other or perform a bowel resection. They simply may not have the training.

Excision surgery requires highly specialized training and hundreds to thousands of operator hours to become adept at it. The surgeon must be able to recognize endo in all its various manifestations, with lesions that could be black, brown, red, white, yellow, blue or clear… even within the same patient. They must be able to operate across multiple organ systems, including ovaries, Fallopian tubes, uterus, vagina, bladder, ureters, ligaments, rectum, small and large bowel, appendix, liver, diaphragm, etc. Most surgeons simply do not have this skill. But an excision surgeon must.

So in truth, excision ≠ excision. If you had to choose, would you rather have a surgeon who has performed 50 excision surgeries or 2000 excision surgeries?