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Tap It Back…Add It Back: Hormonal Add-Back Therapy

All you indoor cycle enthusiasts probably got the reference pretty quickly… Tap Backs are not only good for your core and your gluts but for your quads and your arms (and they are sort of fun at the same time). Dancing on a bike is liberating, to say the least, and lets you think, at least for 45 minutes, that you too could be Beyoncé’s next back-up dancer!

Tap backs are not just good for the body; they are good for the soul (no pun intended!). In the same way, add-back hormonal therapy is good for many different organs. With oral progesterone + estrogen, you are hitting many of those key areas and shaping your future.

Let’s take a seat in the saddle and review why you would need add-back therapy and how it does its job. Many GYN pathologies think fibroids, endometriosis, and adenomyosis run on hormones. No hormones usually = no pain/no symptoms. Therefore, our treatment choices for such problems frequently center on taking the hormones away. Our first line of attack usually includes oral contraceptive pills (OCPs). The synthetic estrogen and progesterone in OCPs feeds back on your brain and shuts off your natural production of estrogen and progesterone.  It’s a complicated pathway of events, but this one daily pill is usually very good at putting the brakes on the body’s own hormone production and keeping those pesky symptoms (pain, bleeding) at bay.

However, in certain cases, the OCPs are no match for the pathology pervading your pelvis—in these instances, we need to look into our bag of tricks and pull out something more powerful. Cue GnRH agonists (a.k.a. Lupron). These injectable (and in some forms nasal) medications shut off the brain’s production of the hormones that stimulate ovarian estrogen production. They don’t waste their time with feedback but rather go right to the source and turn off that switch. And while they are good at keeping things dark when this switch has been flipped to OFF by Lupron, it’s like a major blackout occurred in your body.

Everything hormonal goes dark. And while this darkness is good for stopping endometriosis, fibroids, and the like, it is not so good for those organs that desperately depend on estrogen (think bones). Therefore, in order to satisfy both parties (those that like the dark and those that need some light), we give what is called hormonal add-back therapy alongside the Lupron.

Think of the add-back therapy as a flashlight. It shines light on the areas that are really afraid of the dark (a.k.a. the bones). And like all good nightlights, it does its job well—it can keep the bones happy without reducing the efficacy of the Lupron. It also quells those crazy hot flashes that women can get while taking a GnRH agonist (Lupron). You may be making a funny face, thinking this doesn’t really make sense? If endo is fed by estrogen and then the doctor gives estrogen, won’t that make matters worse? You are sort of right and also sort of wrong. Here’s why.

The doses at which you are taking oral add-back therapy are right at the hormone sweet spot. They are just enough to protect your bones and stop the hot flashes but not enough to fuel your disease (endo, fibroids, etc.). As a result, add-back therapy has become all the rage for women taking GnRH agonists (Lupron). By supplying it, we can give Lupron without much stress over the possible negative side effects. Examples of add-back therapy include norethindrone acetate alone or norethindrone acetate + estrogen. Either combo has been shown to work; however, what works for you must be figured out with your doctor. Most of the time, we start add-back right when the agonist is started. While we used to wait a few months before initiating add-back, we now don’t really think there is any benefit to delaying its start.

Whether you are a SoulCycle or a Flywheel girl, an Equinox fan or a Crunch crazy, you know that, while on the bike, you will burn a serious number of calories. Add-back therapy is the lubricant that allows those wheels to keep turning. Without a little juice, over time, the bike will break down, and you will come to a screeching halt. We want to prevent that in your body by giving add-back hormonal therapy alongside a GnRH agonist. It will allow you to keep “cycling” without much pain. Not bad… Now, let’s see you Tap It Back!

Putting Out the Fire: Endometriosis Treatment

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!

The Most Unwelcome House Guest: Endometriomas

When you can’t find your keys, what do you do? Most of us go to the “hot” spots and start searching. Hot spots are those places that you usually, on most days, drop your keys: on the kitchen counter, in the hallway, hanging on a hook in the garage. By hitting those high-traffic key spots, we are pretty likely to find a match.

When looking for evidence of endometriosis, we go to those hot spots, and the ovaries are the hottest of the hot spots. Endometriosis that implants on the ovaries and forms a cyst is called an endometrioma. News flash: endometriomas and the ovaries are not friends; in fact, they are not even frenemies. They are unwelcome guests that can make the ovaries incredibly unhappy. And here’s why.

Intruders are not fun in anyone’s house. This is particularly true in the ovaries that are already dealing with a limited supply of goods (a.k.a. eggs). Endometriosis on the ovaries can range from mild (a few spots) to major (a whopping 10cm, plus a cyst). Usually, the bigger the cyst, the bigger the problem. And although this may be hard or disturbing to picture, what’s inside the cyst bears a close resemblance to chocolate. While we hope that didn’t destroy your love of everything Hershey’s, Nestle, or Godiva, that is what the brown fluid that leaks out of the cyst looks like.

And while it may look like chocolate, it’s more of an inflammatory soup; factors and mediators lurking in this fluid are not pleasant. They’re irritants. They can damage the ovary and eat away at your egg supply—as well as your quality of life. It is for this reason and others that women with endometriosis often experience infertility.

The walls of endometriomas were not built in a day. They are usually quite tough and scarred. In many cases, the ovary-plus-cyst complex is stuck like glue to surrounding abdominal organs (intestines, uterus, etc.). This can make taking them out pretty challenging. Fortunately, surgeons that specialize in endometriosis surgery have a lot of weapons in their armamentarium.

You want to make sure the good guys are fighting for you, and for this reason, make sure you vet your endo surgeon well. Unlike those keys that you couldn’t find, you can’t just get a new ovary copied. If you lose it, it is forever lost. For this reason, you want to make sure whomever you are trusting to “hold them” knows what they are doing.

The good news about endometriomas is that the hot/cold/found-it game is pretty easy. An ultrasound is pretty spot on in identifying what is likely an endometrioma and what is not. On ultrasounds, the cyst/mass will look greyish/white and solid, and it usually has a lot of blood flow. If your doctor is still on the fence about what is plaguing your ovary or needs more information before surgery, an MRI is usually their go to. With these tools in our pocket, we can decide if surgery is needed, what the best approach for surgery is, and how major the surgery will be. It is important to take good before pictures (say cheese!) prior to surgery so that you have a good idea about what the after should look like.

Unfortunately, the recurrence rate of endometriomas is pretty high, especially when the surgeon does not remove the cyst wall in its entirety. Simply draining the cyst doesn’t do all that much for you or for your chances of being cured.

Word of advice…make sure to ASK your surgeon how he or she plans to remove the endo before signing that consent form. The reason for the high recurrence rate of all things endo is that estrogen is fueling its fire. If estrogen is around, endo will grow—sort of like, if you build it they will come. It is for this reason that, for women who do not have babies on the brain (because they are not ready or they are done), we recommend shutting the reproductive system down (pills, Lupron etc.) after undergoing surgery.

Cold, hot, hotter, hottest—you found it! Endometriomas are often a pretty good giveaway for underlying endometriosis. They have no game face, and when present, you can pretty easily guess what’s causing those unpleasant symptoms. While they may not need to be treated unless causing pain or contributing to infertility, they do shed some major light on what may be hiding in the dark in your pelvis. It may be the key to what you experience in the future—make sure you know where you put it!

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

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!

Secondary Infertility: When Getting Pregnant Isn’t like Riding a Bike

While the “It’s like riding a bike” saying always seems somewhat perplexing (You mean that, after 20 years, I am going to hop on that two-wheeled thing, balance, and ride?), it’s pretty spot on. Even the worst childhood bike riders amongst us are able to pull it together as adults for a ride to the beach. And while you may not enjoy any of it, you can certainly do it. The same can be said, or seemingly should be said, about having a second (a third or even a fourth baby). You did it before; how hard can it be to do it again? And while having a little one will mess with your sleep schedule (and sex schedule!), most couples can find at least a few minutes to give the baby-making thing a go. Unfortunately, unlike the infamous bike, sometimes the second time around isn’t so easy. Sometimes, it is way harder.

Medically speaking, fertility problems when you try for your second, third, or fourth child is called secondary infertility. And although you may have never heard of the words secondary and infertility in the same sentence, you have for sure heard your friends say, “It is so much harder to get pregnant the second time!” “Why?” you may ask. For most couples, the answer is, simply, “time.” No matter how long you put your baby-making efforts on the shelf, time can do some terrible things to our ovaries (decrease in egg quality and quantity). It can also allow GYN problems (fibroids, endometriosis, scar tissue, cysts) time to regroup and regrow. Furthermore, general medical issues occur more frequently as we age. Therefore, while things like high blood pressure and obesity may not cause our reproductive systems any problems per se, they can impact our overall health and your ability to carry a pregnancy.

Much to our dismay, secondary infertility is not uncommon. Nearly three million women in the US find getting back on that bike to be a challenge. All of the potential problems that caused primary infertility (infertility for a first child) are at play in secondary infertility (ovulatory dysfunction, poor egg quality, blocked tubes, low sperm count) and then some…. In fact, with secondary infertility, we are particularly interested in what went down during your first delivery (emergency C-Section, fever/infection, heavy bleeding, retained placental tissue). These factors can be the cause of some serious problems and prevent another pregnancy from progressing. While surgery can fix a lot of what has gone flat, oftentimes, fertility treatments are needed.

The good thing about secondary infertility is that we know that the system(s) worked at some point. Eggs were being released. Tube(s) were open. A sperm was able to fertilize an egg, and the uterus was willing and able. All good news. And while things may not be running so smoothly now, knowing that they did in the past and that you were able to carry a plus one is positive. Whether we can return the system to its previous functionality is debatable (often decided by a slew of fertility tests, including blood work, ultrasounds, a hysterosalpingogram, and a sperm test), but knowing that it was a go in the past is helpful.

While we don’t want you to get back on the bike until you are ready to ride (having more children just to prevent secondary infertility is certainly not wise), don’t wait too long. Although in many cases it will be like riding a bike, there are a good number of us who will run into some major roadblocks. Don’t be fooled by how simple stuff was the first time around—this ride may be totally different. Think of this advice as your helmet. While it may be in your head instead of on top of it, our recommendation may help save you from a pretty bad fall. And if you are going to hop back on that bike, safety is key, because in reality, it’s not always that easy.

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

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

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.

8 Symptoms That Suggest You May Have Endometriosis

Most of us have never even heard of endometriosis (a.k.a. endo) before our GYN throws it out there as a possible reason for those wildly unpleasant symptoms that wake you up every 30 or so days. When getting your period feels like getting hit by a sledgehammer, you very well may be suffering from endo (the implantation of uterine tissue on other organs in the pelvis/body). Here are some other red lights that should flash “endo” in your head.

  1. Painful Painful Painful Periods
    For most of us, no period is a fun period. Those three to five to seven days are never anyone’s idea of a good time. However, for women with endometriosis, these days can be debilitating (and they can start about 1–2 days before your period even begins)! The pain that comes with your periods can put you on the sidelines from work, from exercise, from socializing, and from life. Lying in your bed doubled over in pain is nobody’s idea of a good time. Medically painful periods are called dysmenorrhea. We GYNs ask about it all the time because it gives us a better idea about what you are going through when you get your period. It is the most common symptom associated with endometriosis (nearly 80% of women with endo report it). Therefore, if you are one of the unlucky ladies who languishes on the couch during your time of the month, it’s time to share this info with your doctor.
  2. Chronic Pelvic Pain (a.k.a. Pain All the Time)
    When you are singing the “pain, pain go away, come again another day” song, without any relief in symptoms, no matter where you are in your cycle, there is a pretty good chance that you have endometriosis. The pain can be sharp or dull, focal or diffuse—bottom line, it can be pretty variable. Chronic pelvic pain is seen in about 70% of all women with endo. It can cause a serious roadblock in one’s ability to function both at home and in the office and therefore needs to be cleared ASAP.
  3. Pain with Intercourse
    Women who have endo complain of pain with intercourse (medically termed dyspareunia) fairly frequently (about 45% of women with endometriosis report this symptom). The pain reported is generally a sensation of pain in the pelvis with intercourse (not pain with insertion or vaginal pain). As expected, it can have a serious impact on a woman’s quality of life, and while many women hold back in talking to their GYNs about sex, this is something you should definitely share.
  4. GI Distress
    Endometriosis is not picky in whom she decides to annoy. Lesions are not only limited to the reproductive system but also set up shop on the bowel (intestines). Where they lay their roots dictates what symptoms are felt. GI symptoms include diarrhea, constipation, bowel cramping, and difficulties going to the bathroom. Bleeding from the rectum can also occur. For some women, the GI symptoms can be worse than the GYN ones; it can be pretty intense.
  5. Infertility
    One of the biggest criminals in the infertility battle is endo. Endo can have a seriously negative effect on a woman’s ability to conceive—it can be a pretty formidable challenge for us in the Land of Fertility. The good news is that our treatments can also throw a pretty strong punch, and they can usually knock it out. Pregnancy is most certainly not impossible in women who have endo.
  6. Ovarian Cysts
    The most common site for endo to set up shop is in your ovaries. While the implants can be superficial and select, they usually form a cyst(s). The cyst (medically termed endometrioma) can cause some serious pain. It can also eat away at your eggs and reduce your egg quantity; this translates into what we call diminished ovarian reserve (low egg quantity). While surgery can help with cyst size, it can further hamper your egg reserve. Make sure that you consult with a surgeon who is skilled in endometriosis surgery before you make a date for the operating room. There is no frequent flyer program for surgery. Therefore, you want to limit the number of times you go to the operating room.
  7. Pain with Urination
    Although this may come as a shock, endometriosis can hang out in your urinary tract system. When it pitches a tent, it can cause urinary frequency, urinary urgency, urinary pain, and even retention. Not fun. These symptoms can be scary and confusing, especially when you are totally in the dark about the connection between the urinary system and the GYN system. The two are pretty close, and as a result, one can rub off on the other pretty easily. Definitely let your GYN know what your urinary system is up to.
  8. The Odd Ones
    Endo could be a US spy—it can slide and slink its way into almost every corner of the body. It has been reported in the lungs, the arm, the thigh, the diaphragm, and even surgical scars! So while it is unlikely to hide out in these spots, any atypical symptoms should be reported to your doctor, as it might break the code as to what’s going on in other parts of your body.

Put them all together, and what do you get? No, not bibidi bobidi boo, but rather a pretty bad case of the blues. The symptoms of endometriosis can take quite a toll on your quality of life. They can cause you to withdraw from friends, family, and all sorts of fun. Don’t suffer in silence. There are not only thousands of women who are in a similar situation but also several physicians who are well equipped to treat your pain. We just need to know what’s bothering you, how bad it is, and how best to fix it. Together, we can knock this out!