There are certain subjects in school (think calculus, physics, and for some of us, poetry) that just make you want to go, “Ugh.” Looking at formulas or sonnets makes you want to rip your hair out. No matter what you do, you just don’t get it. In many ways, the same can be said for endometriosis (a.k.a. endo). It is sort of like that black box in gynecology and infertility. We know it hurts. We know it can cause infertility, and we know it can cause problems. But we’re still a bit unclear on the hows and whys. How does it get there? Why does it get there? How does it cause pain? Why does it cause pain? While many of these questions have the start of an answer, they lack a conclusion. The unknown can make them hard to diagnose, to manage, and to treat.
Welcome to Endo 101. Here, we will give you the abridged version. Endometriosis is the implantation of endometrial tissue (that is, the tissue that is supposed to stay inside your uterus and only your uterus) in other places. How these cells break free from their uterine jail is as much of a mystery as how El Chapo escaped from jail. However, once the inmates (or cells) have been released, it’s tough to get them back in.
Many of us in the biz or in the know refer to endometriosis as “endo.” The shortened nickname does not mean the symptoms and the negative side effects that its presence brings are in any way short. In fact, this laundry list is quite lengthy. Women often report symptoms ranging from pain (including pain with periods, intercourse, defecation, and urination), infertility, diarrhea/constipation, and a no-joke impact on one’s quality of life. Symptoms can even be as vague as back pain, chronic fatigue, or abnormal bleeding.
The degree of pain and even infertility can be mild, or it can be severe. And the worst part of it all is that the extent of disease doesn’t equal the degree of symptoms (it’s sounding even more like calculus!). The trickiest part about endo is that, to diagnose it, you must operate on it. Symptoms and even visuals (ultrasound images) can’t make the call (although they can come pretty darn close). You must go to the operating room and have the tissue sent to the pathologist for a diagnosis. Although you can be nearly certain that the diagnosis is endometriosis, you can’t prove it without a reasonable doubt until the eyes of your pathologist friend sees the evidence. The judge and jury here are pretty small.
If you are suffering from endometriosis, you have probably thought on many a night, “Why me?” How did I win this unlucky lottery? Endo is no $200 million Powerball—it is actually fairly common. In women undergoing surgery for pelvic pain, up to 30% will have endometriosis. It’s nearly impossible to know how common endo is in the general population because many women will have it but won’t even know it. Bottom line, it is likely way more common than we know.
What makes someone more likely to hit the “un-lottery” lottery has not been fully worked out. While we know that there is definitely a genetic component, the endo gene(s) have not yet been identified. However, if your mom, grandma, and sister have it, there is fairly good chance you will, too. Other likely originators of endo include:
- Changes in the immune system,
- Retrograde menstruation (when the blood goes backwards through the fallopian tubes into the pelvis rather than out of the cervix into the vagina), and
- The passing of endometrial cells through the lymphatic system (think lymph nodes, which are actually located not just in your throat but throughout your whole body!).
Who will win a game of Roulette is anyone’s guess, but our money is on a mixture of all three. Additionally, women are less likely to have endo if they have had multiple children, breastfed for a long time, or got their first period later. On the flipside, women are more likely to have endo if they have not had children, got their periods early, went through menopause late, bleed for longer duration with their periods, have more frequent periods, and variations in their reproductive anatomy (called Mullerian anomalies). While you may have gotten it without any of the above, we as fertility MDs are definitely more likely to look for it in certain women.
The thing about endometriosis is that it only makes a peep when estrogen is around. If there is no estrogen (hence hormonal contraceptives, Lupron, or menopause), endo is quiet as a mouse! Because it can’t act without estrogen, it pretty much only impacts women during their reproductive years (late teens to 40s). For this reason, most of the treatments center on shutting down the production of estrogen. It’s like taking the logs out of the fire. Without fuel, nothing can burn! While this sounds all well and good, most of us can’t be without fuel for our whole life. At some point, you might want to get pregnant. This will require adding fuel back to the fire. For this reason, it’s not a bad idea to see a fertility specialist before you stir things up.
Endo plays a pretty bad game of hide and seek. (Basically, we can see it coming from a mile away!) When the decision is finally made to go into the operating room and take a look, the disease is often pretty easily spotted. While the most characteristic appearance consists of the blue/brown “powder burn” spots, the look of endo can be very Houdini-esque. Endometriosis can look like brown spots, red patches, yellow-brown discoloration, or white spots.
To know for sure what’s up, the tissue must be sent to the pathology lab for a thorough onceover. The most common places for endo to hang out are on the ovaries, on the tubes, in the pelvis, on the ligaments that hold up the uterus and the ovaries, in the colon, and on the appendix. Where it makes its home often translates into the symptoms that you have. Again, this is not always the case. Some women can have endo painting their ovaries, their tubes, their pelvis, and their colon and experience no symptoms.
While surgery is required to make a diagnosis, not everyone needs surgery. A good history, physical, and sometimes imaging can give us enough info to convict (a.k.a. start treatment). The treatments are plentiful (think Thanksgiving Day dinner) and will be passed around to see which “tastes” best for your body. Women who are trying to get pregnant ASAP will have to opt out of most of the dishes (although options still exist). The silver lining with endo is that, for almost all women, the symptoms disappear during pregnancy. While we don’t recommend getting pregnant simply for an endo time-out, it will make matters way better.
Unfortunately, endo is the gift that keeps on not gifting (or re-gifting things you don’t want!). And unlike a good gift giver, there is no receipt and no return policy. If it is yours, it’s yours for life. There are many ways to tailor that shirt or tighten those pants so that you can live with them. Same goes for endo. We can do a lot to make you pain free if we know what’s putting you out. It’s definitely a bumpy ride. You may need several fittings, but we know a pretty good tailor. Just make sure to be completely honest with your doctor, and do your research before committing to any treatment.