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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!

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!