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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!

What Endo Can Do to Your Eggs, Your Tubes, and Everything in Between: Endometriosis and Infertility

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Endometriosis (a.k.a. endo) does not mess around when it comes to infertility. It can have some pretty serious consequences on almost every organ in your reproductive tract and beyond (ovaries, tubes, plus). That’s why it’s no stranger to any fertility MD or any fertility clinic. We are always on high alert looking for the “enemy” lurking in our midst. Many, if not most, cases of unexplained infertility are likely due to endometriosis, but it can play a pretty good game of hide and seek. Unless we go undercover in the operating room, we often won’t find that endometriosis, no matter how hard we look. While making endo’s official acquaintance may be difficult, we can speculate with pretty good certainty about its presence. Symptoms such as painful periods, chronic pelvic pain, pain with intercourse, and certain cysts serve as the “bread crumbs” (think Hansel and Gretel) for us fertility doctors who are looking for endometriosis.

Nearly quarter to a third of couples suffer from unexplained infertility (all points on the fertility list have been checked, but nothing seems to be wrong).  About 40% of these couples are battling the big bad E. Why and how endo causes infertility is about as controversial as the 2016 presidential election, and like it, we don’t recommend mentioning this topic at dinner with your future in-laws! Some think that the stage of disease (a.k.a. how aggressive it is) has an impact on how it does its dirty work.

For example, women with mild/minimal endo (stage I or II; after-surgery endometriosis can be “staged” or classified by an endometriosis grading system) may be battling infertility because there are a lot of negative vibes (say, prostaglandins, cytokines, and chemokines) lurking in the corners of the pelvis. These substances are hormones you hope to meet on only very few occasions: they are not kind to the body. They can cause pain, inflammation, and tissue damage. They are released by endometriotic tissue, and their presence in sacred places (ovaries, tubes) can throw things off. The ovaries, tubes, and even the endometrium are not happy with these guys around. Follicular development, fertilization, and implantation can be impacted (and not in a positive way!).

On the flip or the more severe side, when severe (stage III or IV) disease is present, it’s not only hormones that you have to worry about fighting. Picture a Sunday-night Game of Thrones episode—you have the Starks, the Lanisters, the Baratheons, and the Targaryens (not to mention the White Walkers and the Wildlings). In the “game of fertility,” severe endo not only causes inflammatory soup, which is thick and unappealing, but also adhesions and structural abnormalities. Scar tissue in the pelvis can impact the release of eggs, block a sperm’s ability to get from the uterus to the egg, and/or prevent the tube from picking the egg up if and when it is released. Furthermore, endo eats away at your egg count. Less eggs = less chance at a good embryo = less chance at having a baby.

In many ways, it is easier to get Congress to pass a bill on immigration then to get a group of fertility specialists to agree on how best to treat endometriosis. Bottom line, there will be a lot of filibustering on both the surgery and the medicine (clomid, letrozole, IUI, IVF) side. Back in the day, we did surgery (a diagnostic laparoscopy) on anyone who walked through our doors with infertility. It was a part of the evaluation just like a sperm check or tube check. Long gone are the days of diagnostic surgery. If you doctor suggests one, you should skedaddle your way out of that office! However, if the symptoms are there and enough red flags are flashing “endo,” you may consider going to the operating room to see what’s up. There are definitely medical data out there that show that, if endometriosis is removed, your fertility can get a boost, particularly when the disease is more mild/moderate AND in the approximately six-month window immediately following surgery. Watch for doctors who are having you double dip. You really want to avoid multiple trips to the operating room. This is where you are more likely to get complications, more likely to compromise your egg count, and less likely to get anything beneficial out of the surgery.

Think about when a congressman or woman is up there trying to sway voters. They will use a lot of reference and data points (some more accurate than others) to push the needle their way. The same can be said as to why your doctor thinks surgery gets a green or a red light. Some things that put you on the STOP or DO NOT ENTER THE OR list include previous surgery, advanced maternal age (greater than 35 years old), other fertility factors that would warrant IUI or IVF (low sperm count, blocked tubes), and a history of previous fertility treatment. Such factors usually warrant more aggressive fertility treatment (a.k.a. IVF) anyway, and therefore, going through surgery before would likely not be beneficial. Of course, there are always exceptions. We cannot stress how important it is to hash these points out before you take to the podium. You want all the information before you cast your vote.

If you do opt to give surgery a go, make sure it is with someone who specializes in endo surgery. Many doctors like to operate, but endo is not their area of expertise, even though they might say it is. Make sure they have been well vetted before you decide to go with them. If you do take the plunge and go to the operating room, depending on your level of disease, your age, and your other factors, you may be able to give the good ol’ old-fashioned “timed intercourse” a shot in the three to six-month window after surgery. There is some evidence to show that mild/minimal disease treated surgically in women less than 35 years old increases their fertility in the three to six months after surgery, but we cannot stress enough that the benefit of surgery does not last forever. The time window is limited!

While we would not recommend holding back on fertility treatment forever, a brief hiatus to give timed intercourse a go is acceptable. In women with more advanced endometriosis, fertility treatment is usually started right after surgery—there is not much time to waste. The additive effect of surgery plus fertility treatment can be just what the doctor ordered for pregnancy. While the fertility treatment can range from oral medications (think clomid or letrozole) + insemination, injectable medications (think Gonal F and Follistim and Menopur) + insemination or IVF, we usually want to optimize this endo-free or endo-reduced period to its greatest extent. It may take some time to reach a consensus on surgery vs. fertility medications/IVF, but there is one that is a total no brainer—medical therapy for those who are trying to get pregnant. Hormone therapy (oral contraceptive pills), Lupron, and anything that turns your system off is not going to allow you to get pregnant. Therefore, during these trying times, it’s a no go.

Another no-go or not-necessarily-go is removing those unattractive blood-filled inflammatory-laden cysts (i.e., endometriomas) just because you want to have a baby or just because you are doing IVF. Their presence is only problematic if you have pain or we suspect an ovarian cancer might be lingering within, not because you want to have a baby. The exception to this rule in the land of fertility treatment is if the endometrioma’s position could impair your doctor’s ability to do an egg retrieval. Otherwise, while yes, you may want or need some antibiotics at the time of the egg extraction, (these cysts can become infected at the time of retrieval), they should not get in yours our way too much and can stay the course!

You can’t just flip the channel here and decide not to watch CNN until your trusted lawmakers finally make up their mind. With endo, you have to decide which route to go sooner rather than later. Otherwise, you could be waiting a very long time for a baby and dealing with a lot of pain—filibustering will not fly. Because endo has a real-deal impact on your fertility, we often need to pull the big guns out to get things going and to get endo out of your pelvis! Don’t get bullied into a treatment plan that you are not comfortable with; there are options. Stand your ground—your voice and your vote matter when it comes to endo and infertility. You need to like the view from your side of the aisle!

My Teenager Is in Terrible Pain…Could It Be Endometriosis?

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The teenage years are tough—for both parents and teens. Figuring out who you are, what you want, and how you want to get there can be tough, to put it mildly. Peer pressures, raging hormones, and discoveries can be overwhelming. From alcohol to boys and cars to clothes, your teenage daughter is riding a seemingly never-ending rollercoaster of emotions. The ups and downs can make anyone vomit, even those with an iron stomach.

Adding the debilitating “take you out of the game and sideline you from school”-type of pain can make matters a whole lot worse. It can be frightening, confusing, and exhausting. And while getting your period is a rite of passage, severe pain is not. It is important for both mothers and daughters to recognize this—you should not blow off blow-your-socks-off pain every month. Endo can affect teens just as it affects women in their 30s. Here’s the deal on endo in adolescents.

Interestingly, if you ask most women who have endo as adults when their pain started, most would say under the age of 20. Although initially we thought it took years for endo to develop, we now know it can start right after the first period (and in very rare cases, before). Just like their adult female counterparts, we don’t really know exactly why endo forms. The big four include retrograde menstruation (when blood goes backwards into the tubes, ovaries, and pelvis as well as forward), the spread of endometrial cells through the blood vessels and lymphatic systems, the differentiation of undifferentiated cells, and an alteration in the immune system. And like everything else in life (thanks, Mom, for those bunions!), genetics plays a big role in who gets endo and who doesn’t. Girls whose moms or sisters or grandmothers have endo are more likely to have endo themselves.

It’s important to recognize or help your daughter recognize that intense pelvic pain and debilitating menstrual cramps are not normal. You don’t need to just toughen up and take it. You need treatment. Adolescents with endometriosis are more likely to complain of both cyclic and acyclic pain (a.k.a. pain during menses and pain throughout the menstrual cycle—pain all the time). Young girls are also likely to complain about GI stuff (constipation, pain with defecation, rectal pain, and bleeding) as well as urinary discomfort (pain, urgency, and blood in urine). The only way to make the diagnosis is to see a doctor who you can “dish” to.

A thorough history can crack the code. While a physical exam and blood tests are also a must, they definitely come second and third. While ultrasound and other “picture-taking” tests are key in diagnosing adult women with endo, they are less so in the adolescent population. We almost never see ovarian cysts (a.k.a. endometriomas) in adolescents, and therefore, the ultrasound is less helpful. However, it can be helpful in excluding structural abnormalities of the pelvis, which can go hand in hand with endo. Bottom line, make sure you or your daughter are seeing a doctor she is at ease with. These conversations, especially when they are the first of their kind, should be had in a comfortable environment.

After the diagnosis has been made, the first choice of treatment is medical. The go-to medical option is nonsteroidal anti-inflammatory agents (a.k.a. NSAIDS; Advil, Motrin, and the like). In most cases, we recommend giving NSAIDS plus hormonal therapy (oral contraceptive pills, implantable devices, or injectable medications). The dynamic duo has a way of keeping pain at bay (without any harm to yours or your daughter’s future reproductive abilities). If this pair does not work (most GYNs recommend at least a three-month trial), we suggest a more thorough investigation before amping up the treatment; that usually includes a surgery (laparoscopy) to look inside and confirm endo is what we are dealing with. At the same time that a diagnosis is made, surgical treatment of the disease (if the bad guy is, in fact, endo) can be performed. Our words of wisdom when it comes to surgery are limited to one sentence: Make sure the surgeon who is operating on you or your daughter specializes in this! Look for a pediatric GYN or a pediatric surgeon or an adult endo surgeon with experience treating adolescents. Therefore, if surgery is needed, they should be the ones to do it.

If surgery is needed, it often doesn’t end here. The after party is often just as important as the pre-party—we recommend that adolescents who undergo surgery for endometriosis receive medical treatment following the procedure. Those endo areas are making a lot of unpleasant substances (a.k.a. prostaglandins and cytokines), which are no one’s idea of a good time. Even the best of surgeons can’t get every last bit out. To keep those angry areas quiet (and prevent them from growing from small problems to big problems), GYNs generally start hormone therapy—think oral contraceptive pills.

By turning off your system, we can keep whatever is left (as well as all the good that the surgery did) silent. Although there are other ways to keep things quiet (both pre and post-surgery), some may be too much for a young girl’s bones to take. Lupron is very good at shutting things down. However, in its zest to keep the ovaries quiet, it can have a negative impact on bone density. As a result, we are hesitant to prescribe it to young girls.

We certainly don’t recommend labeling all pelvic pain in teenage girls as endo. There are other processes that can cause pain, including pregnancy, appendicitis, pelvic inflammatory disease, GI issues, and structural abnormalities of the GYN system. Pelvic pain can also be the result of sexual abuse. Although endo is not uncommon in adolescents (about 30% of adolescent girls with chronic pelvic pain have endo), we have to keep our eyes open for other possible problems. We remember being teenage girls—those years can be tough, to say the least. Make sure to talk about what’s going on with someone you trust. It can make all the difference in early diagnosis. This is one place where “no pain, no gain” does not apply!

Inflammatory Soup with a Side of Adhesion Bread: Endometriosis

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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.