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Putting Out the Fire: Endometriosis Treatment

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Living in New York City, we don’t usually see those forest fires some of you ladies see out West. While we watch it on TV and read about it on the Internet, those days and days of blazes are something of a foreign concept to us. However, what we have taken away from those images are the hoses upon hoses and the buckets upon buckets that those firefighters must use to quell those flames.

Endometriosis (a.k.a. endo) is to your pelvis as a big forest fire is to California. If it is not put out quickly, it can be devastating. The good news is that, just as the firefighters have many tools in their truck, we too have several potential treatment options.

For women who do not have babies on the brain, there are many “hoses” that can help put out your fire. You have both medical and surgical options. When fertility is not in the near future, shutting your own system off medically with hormonal therapy is no big deal. Most GYNs will recommend that you start basic (non-steroidal anti-inflammatory agents/NSAIDs plus hormonal contraceptives).

Go big only when the fire continues to rage. NSAIDs combined with continuous hormonal contraceptives (continuous birth control pills) are usually pretty good at putting out “smaller fires” (mild/moderate endometriosis). It doesn’t matter if you prefer the oral, vaginal, or skin (a.k.a. patch) route for hormonal treatment. They all work the same, and here, it is more a matter of preference than potency. If estrogen is out because of a medical contraindication (clots, smoking etc.), then progesterone can be given in isolation with NSAIDs.

If this concoction is not keeping your symptoms quiet, we start climbing the treatment ladder. Our next step is usually a GnRH agonist (cue Lupron) combo’d with add-back hormonal therapy (estrogen and progesterone). If this doesn’t bring things to a halt, we usually give aromatase inhibitors (think Femara) a try. The aromatase inhibitors work by decreasing circulating estrogens in the body.  Estrogen is like gasoline to the endo fire. It doesn’t take a firefighter to tell you that it’s probably not a good idea to throw gasoline on a fire!

One treatment is not necessarily better than another. Some just work better in certain people. What is different is how they are administered (oral, injection), how frequently they must be taken (daily, weekly, monthly), and how much they cost (a little vs. a lot!). You have to see what works best for you and your symptoms.

When medical treatment isn’t cutting it, surgery is an option—no pun intended. We try to reserve the bigger guns for the bigger flames; starting with surgery is usually not a good idea. In general, the basic tenant of endo is to max out on medical treatment and avoid repeat surgeries—repeat trips to the operating room do not earn you frequent flier miles. It just earns you a lot of scar tissue, a lot of risk, and a lot of anesthesia. It’s not something you want to do.

If you do find yourself needing to make that trip down the runway, make sure your pilot has been around the block several times—no first-timers here. Endo surgery is no walk in the park; you want your surgeon to be experienced.

Gynecology has gained a couple of new subdivisions in the past few years. There are now GYNs who spend years after their residency learning how to do endo surgery. Their second home is in the operating room. Let’s just say that, when you need a tour, they should be the ones to do it! There are a variety of surgical procedures that can relieve your symptoms. The specifics are above the scope of our conversation, but what you do need to know is the following. Know your surgeon, know why they are doing what they are doing, and know how many times they have done what they are suggesting you do. Trust us; it’s super important.

No two fires are exactly alike. Similarly, no two cases of endo are exactly alike. While for some, pain is the biggest problem, for others, it is GI symptoms. Because of the variability in symptoms, in severity, and in life plans (fertility vs. no fertility), the treatment plan that “puts out your fire” will likely vary. What gets you going or stops your endo from growing may be different than what helped your sister or what helps your BFF.

Although we probably won’t ever treat you, we can recommend that you treat yourself with the utmost respect. Be aware of your symptoms and what makes them better or worse. Have your GYN on speed dial—don’t tell them we told you that!—and tell them when things are not going so well. And while we don’t recommend you ringing them on weekends and in the nighttime unless urgent, you should feel comfortable calling them. If their answers are not cutting it, don’t be afraid to remove them from your contacts and find a different doctor.

Unfortunately, endo is a chronic condition. Once the treatment hoses are turned off, the fire will likely return. After your baby days are done, you may elect to undergo definitive surgical treatment (a.k.a. a hysterectomy and bilateral salpingo-oophrectomy: simply stated, ovaries, tubes, and uterus out) to ensure that you never face another forest fire. Until then, let us help you temporize the flames so that you can fight whatever fires, be it professionally or personally, that you choose to extinguish. There is nothing you can’t put out if you put your mind to it!

Variety, Variability, and a Very Good Surgeon: The Many Flavors of Removing the Uterus

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As if reaching a decision about if and when you want to get your uterus out is not enough, you now must also decide how much and in which way your uterus will come out. Unbeknownst to many, the uterus can come out from above (a.k.a. abdominal), below (a.k.a. vaginal), or a little of both (laparoscopic assisted or robotic). But it’s not so cut and dry (no pun intended). Imagine you are standing on line at your favorite ice cream shop. In those minutes before you give your order, you run through the options and the pros and cons of the various choices—chocolate with sprinkles, vanilla with chocolate chips, or maybe toffee crunch with nuts. Although whatever gets you to go with chocolate over vanilla is not so memorable and fairly insignificant, what makes you choose a vaginal hysterectomy versus an abdominal hysterectomy or doctor A versus doctor B should be unforgettable. So, as your favorite ice cream scoopers, here’s what’s on the menu—step by step.

Flavor (Is my uterus coming out?)

The first decision that must be made (whether on the ice cream line or in the hysterectomy process) is the most basic one: are you going to remove your uterus? This decision is a big one, and when making it, you must be comfortable and clear on why you are doing what you are doing. Is it because of pain, pressure, bleeding, or cancer? And have you tried medical or non-surgical treatments before moving on to surgery? Whatever the reason there must be a reason and a reason that does not have any other solution. And while we are not knocking vanilla ice cream, your reason for taking out your uterus should not be “vanilla!”

Cone or cup: Are you going to take out all of it (a complete hysterectomy) or a part of the uterus (a.k.a. a supracervical hysterectomy?)

After you decide what flavor you are choosing, you must decide how to eat it. Translate that into your uterus. After you decide if you are going to take your uterus out, you must decide if you want to remove your uterus and cervix (total hysterectomy) or just your uterus (supracervical hysterectomy). There has long been a suggestion that women who take out their cervix will suffer sexual consequences, dysfunction, and urinary incontinence. However, more recent data have debunked these theories, and most women opt to take the cervix out with the uterus to reduce the risk of cervical cancer. And while you have a lot of say in what you are going to leave and what you are going to remove, your doctor will also be a big part of this decision.

Toppings (Is my uterus coming out abdominally, vaginally, laparoscopically, or robotically?)

Even for us GYNs, it’s sometimes hard to believe how many different ways there are to remove the uterus. Long gone are the days of it’s abdominal or bust. Depending on things like the size of the uterus, the pathology (problems) affecting the uterus, the shape of the vagina, the presence of other medical conditions (think things like heart and lung disease), past surgical history (previous abdominal/vaginal surgeries), and the need for concurrent procedures (removing your ovaries as well as your uterus), one way may be recommended over another.

While there are pros and cons to each approach, research shows that, in most cases, the safest way to remove the uterus is vaginally. And while you may not be a candidate for a vaginal hysterectomy (the uterus is too big or you have had 3 C-sections in the past), it’s important to ask your MD why she is recommending a certain route and why you are not a candidate for another. It’s your uterus, and you deserve answers. And remember, the answer should never be because that is what the surgeon is most comfortable with…it should always be what you are most comfortable with.

With a cherry on top (Whom are you selecting as your surgeon?)

Deciding who is going to do the “scooping” (a.k.a. your surgeon) is a big decision. Not all “scoopers” were created equal. Some of us scoop daily, while others scoop no more than once a year. And as you can imagine, the more you do it (otherwise known as operate), the better you are at it. Make sure to ask about the surgeon’s experience, surgical outcome data, and training. It can make a huge difference in how your procedure goes.

While this is no ice-cream parlor and you may not be lining up to get your uterus out, if done in the right way, for the right reasons, and with the right surgeon, you will be enjoying an ice cream cone in no time. A hysterectomy may not be the treat you were dreaming of, but it will likely take care of many of your problems—at least when it comes to your female organs. So start building your perfect “hysterectomy sundae.” It can bring you sweetness and satisfaction for years to come!