Endometriosis, Fertility and Birth Control

Considering it affects an estimated 1 in 10 people with periods during their reproductive years, there are many unknowns about endometriosis. This is characterized by pain and difficult menstrual cycles. Symptoms include painful periods, pain during ovulation, pain during or after sexual intercourse, heavy bleeding, and chronic pelvic pain, often makes it more difficult to get pregnant.

March is Endometriosis Awareness Month so Dr. Betty Acker, an OB-GYN at Nurx, went on to Instagram Live to chat with Dr. Sara Vaughn, a reproductive endocrinologist with Spring Fertility to talk endo, birth control, fertility and the interplay between them. Here’s a (lightly edited) transcript of their conversation, in which they answer questions from the Nurx and Spring communities.

What is endometriosis? How does it occur?

Dr. Vaughn: So in the natural menstrual cycle, estrogen causes the lining of the uterus, the endometrium, to grow. And then once the egg leaves the ovary, the ovary secretes a hormone called progesterone that causes the lining to change to prepare for an implantation or, in the absence of a pregnancy, prepare for shedding. So once we get our period, that blood, like we all know, comes out, but also some of it will go backwards through the fallopian tubes, and that occurs in everyone. 

But for some reason, in some women, the actual tissue from the endometrium will implant into various places in the pelvis that it really shouldn’t be. And this may be occurring in all of us to some extent. But in women who don’t have endometriosis, the body is essentially clearing that tissue, resorbing any blood, resorbing any tissue. And for some women with endometriosis, those implants will stay and implant, basically. And just like the tissue that’s inside of the uterus will respond to hormones, grow when exposed to estrogen, and become inflammatory basically during the menstrual cycle — because the immune system is very deeply involved in the process of us having our periods. So many women have a little bit of cramping with their period, but women with endometriosis will often experience more intense cramping because they have this tissue that’s hormonally responsive in many more places within their pelvis.

Now, that’s the most common theory of how endometriosis occurs. There’s a couple of other theories that try to account for a few women who have endometriosis cases where this backflow bleeding and tissue implantation just doesn’t seem to explain it. There have been cases where women have had endometriosis in very bizarre places like the lungs or the heart, and in places where we wouldn’t expect menstrual blood to be able to flow. And so there is some thought that these tissue implants can also just develop on their own, sort of just changing from one cell, from a stem cell to an endometrial like cell and essentially creating the same environment of potentially wreaking havoc, of creating inflammation in places where it shouldn’t be. 

Now, it’s important to say that there are women who are completely asymptomatic and don’t experience this extra pelvic pain and also don’t necessarily have a diagnosis of infertility. There are women out in the population who have these features of endometriosis and are completely asymptomatic and ultimately never have a diagnosis. And because of that, we don’t really have a clear sense on how many women in the population have endometriosis at baseline, because it’s hard to get data on all women in the population. 

But the best data that we have estimates this based on women who’ve gone through other surgeries unrelated to infertility, unrelated to pelvic pain, the best group being women who come in for elective sterilization after having babies — the prevalence in this group is about one to seven percent. But we do see this quite more frequently in patients who come in to see us with the diagnosis of infertility. And this group that we see the most for infertility are part that really the group of women who have chronic pelvic pain. 

Endometriosis is a hard diagnosis to make, because some pain with your period might be normal and excessive pain with your period might not be normal. And where do we really draw a line? I think if you’re feeling like you’re having really painful periods or pain outside of your periods, it just really warrants being seen by an OBGYN or a reproductive endocrinologist to be assessed for endometriosis, and also whether we can do something about your pain. I think in women’s history, we have a long history of women dealing, living with pain and the normalization of that pain and I truly think that we are changing that, and I think that’s a really good thing. I don’t think anyone should have to live with chronic pelvic pain, and really painful periods should not be accepted as normal.

How can birth control help treat Endo? What are other treatments? And then if they’re one form of birth control, that’s best, whether that’s the implant or the pill or whatever else. 

Dr. Acker: I’ve been in private practice for many, many years and I’ve seen a number of patients with a potential diagnosis of endometriosis. So I’m a very pragmatic doctor and I was taught that for endometriosis it is best to try treatments for the presumed diagnosis before rushing off to any  kind of surgical diagnosis. So the number one first step in treating endometriosis or presumed endometriosis is going to be some kind of hormonal manipulation. And we usually start with something simple, like a birth control pill or one of the other birth control contraceptive methods available. I don’t think that there’s any data that would say that one specific birth control pill out of 150 some different kinds of pills is any better. It’s the modality of the hormones working together to kind of decrease the inflammation, decrease the spread, decrease the activity of the endometriotic implants, that reduces pain and symptoms. 

So how long can you use birth control as a treatment before something like a surgery is needed? 

Dr. Acker: I think you have to look at the response to the treatment. You certainly wouldn’t continue a treatment that isn’t helping your patient. So if a young woman comes to me, her periods have become more painful than what she’s used to, which is a common complaint, because when women start their periods and their hormonal control is not perfected yet, some of these effects of the endometriosis aren’t even seen because there’s not that hormonal support to the endometriosis. So as the woman’s aging and as her reproductive system is kind of maturing, if the symptoms become worse, my number one question is “How is this affecting her life, their life? How are they able to cope with it? How are they able to go on with their daily activities?”  If we take the first step of treatment and it’s successful, then the patient can continue as long as necessary. There’s absolutely no reason to stop something that’s working. There’s no specific timeline or point in time. 

Can taking birth control to help with endo reduce the ability to get pregnant in the future? How does endo affect my chances of getting pregnant in the future? 

Dr. Vaughn: First of all, being on birth control pills for an extended period of time doesn’t affect anybody’s ability to get pregnant in the future. It doesn’t help. It doesn’t hurt. It is a very effective treatment for endometriosis, the only challenge is that when you want to get pregnant, you do have to stop your birth control pills at some point. And if you have a suspected diagnosis of endometriosis the first question that I will always ask is, “How much pain are you experiencing right now?” Because if your anovulatory cycles on the pill are already incredibly painful for you, well, that might be a time to say we need to do surgery before letting you ovulate, and how much pain you experience. But birth control pills generally are very good treatment for pelvic pain. 

I’ve definitely had patients who come to me after stopping the birth control pill for a couple of months, and who are in severe pain and who do surgery in order to let them have the time to try ovulating on their own and not continue to be in severe pain. 

Now, who’s going to have issues with fertility? That’s something we don’t really have a great crystal ball for. At the end of the day, when patients come to me for egg freezing or for baseline evaluation, I can tell you a couple of things in terms of what the experience of egg freezing would be like for you, what the experience of IVF would be like for you. But I can’t tell you if you need IVF, and that’s challenging. And we handle it a little differently based on age group, based on whether or not there are other risk factors. We’ll do a basic evaluation. But still, even with women who we very suspected of having endometriosis or even have a known diagnosis of it, we’ll still typically have you try to get pregnant on your own, because trying on your own is the best test of your fertility.

I always tell patients infertility is not a diagnosis of sterility. If you had your fallopian tubes removed, you are sterile. If you’ve had your testicles removed, you are sterile. But infertility is a diagnosis essentially of inefficiency of reproduction. The technical diagnosis of infertility is trying on your own for a year and not conceiving. And at that point we recommend fertility treatment, not because we think your chances are zero, but because we think your chances of conceiving with fertility treatment are more efficient and higher than the chances of conceiving on your own on a month to month basis. Now, if you’re a patient with a high suspicion of endometriosis and you’re over the age of thirty-five, we recommend you come for evaluation after about six months. So you come in and see us a little sooner. And that’s not because the diagnosis necessarily changes, but again, because aging is starting to affect your baseline fertility. Aging affects every woman’s egg quality at a certain point. We always have to factor in baseline age egg quality into our treatment plan, into our reproductive efficiency, also considering what sort of family size you want. And so I think that any woman who suspects they have endometriosis should talk to their OB-GYN or reproductive endocrinologist and talk about their family goals, because that conversation helps the provider think deeply through a plan of how to reach those goals. But at the same time, there’s still a period of trying to conceive on your own that is the best diagnostic test for infertility at the end of the day. 

Is there a certain like an average amount of time that it takes for somebody who has endometriosis to get pregnant versus somebody who doesn’t? Or is that just very personal?

Dr. Vaughn: No, I wouldn’t say there is an average time. What I would say is that typically if you just look at baseline population statistics, about 75% of women younger than the age of 35 will be pregnant within six months of trying. And about half of those women, if they try for another 6 months, will be pregnant by the end of the year mark. And so I think that if you’ve tried for 6 months and have the suspected diagnosis of endometriosis, for me, that’s a good time to come and touch base with a fertility doctor. Not everybody will necessarily warrant starting treatment, but I think it can be very comforting for patients to have an evaluation to have a general sense of the plan. I find that the patients who come to me after having tried for two years, they’re the most stressed out at the beginning of treatment. And I think it’s really comforting to have a plan and to have goals and have next steps for patients in terms of planning their family. When does it warrant going to a more aggressive strategy, and when are we going to say, “No, you’re young, you have time.” We want to be as natural as possible, and take the patient’s personal goals into account. 

Dr. Acker: The general sort of definition of infertility is a year, as you mentioned. And that, of course, applies to younger women. That doesn’t apply to women over 35 who start to have other factors. The statistic I always quote is 80 percent of couples will be pregnant within a year of trying. And then at that 6 month touchstone, you have to look at the statistics of do you keep trying on your own without any other risk factors or anything complicating the situation, knowing that you still have a very good chance of getting pregnant versus undergoing treatments, because we don’t have data that will necessarily say that those treatments are going to make a difference. I often have conversations with my patients about, sure, we can go ahead and start the testing, start down this path. But that doesn’t mean that something I’m going to do or uncover or discover is going to make a difference and in the goal of you being pregnant. 

Dr. Vaughn: One of the things that comes up a lot is should we check the fallopian tubes right off the bat? And that’s a challenging one. So endometriosis is basically like sticky, sticky stuff all over the pelvis, and it can cause the fallopian tubes to either become scarred or to not do such a good job at picking up the eggs from the ovaries. If you look at diagrams, it may look like the fallopian tubes and the ovaries are attached, but they’re not. The fallopian tubes move over to the ovary in close proximity, and in about 30 percent of cases will actually move over to the other ovary and pick up the egg from the other ovary, so the right and left fallopian tubes don’t necessarily only stick to the right and the left ovaries themselves. But the concept is that endometriosis may cause the fallopian tubes to not do their job as well, but the testing that we have for fallopian tubes, unfortunately, is not great. 

The testing we have for fallopian tubes is really a triage test of whether or not you’re a good candidate for insemination and superovulation, which is basically a treatment that’s referring to trying to improve the efficiency of your body’s ability to get an egg and sperm to meet. If the fallopian tubes are entirely blocked, then you’re really not a good candidate for trying to get pregnant inside and using your own body. You’re a better candidate for us to take the eggs and the sperm out, create an embryo outside the body, and then implant it in your uterus.

So to evaluate fallopian tubes we do something called a hysterosalpingogram, which involves injecting dye into the uterus and we should see the dye go through the fallopian tube in a normal, anatomically normal fallopian tube. That test can have false positives and false negatives. So what do I mean by a false positive? So let’s say the test shows blocked fallopian tubes. Well, it turns out your fallopian tubes have muscles in them and they can actually spasm as a result of putting the dye inside of the uterus. And so we might do that test and say, “Oh, the fallopian tubes are blocked, you need IVF” when you really might not.  

The second part of that test is that if I put dye inside of the uterus and it goes out through the fallopian tubes, I can tell you, “OK, your fallopian tubes are open” , but I can’t tell you how good they are at picking up an egg. I like to think about this, like, if you’ve ever been to a carnival and played one of those games where you press the button and then you have the arm go down and pick up a stuffed animal. I can tell you that it works, but I can’t tell you how efficient, how often it’s picking up a stuffed animal. There’s unfortunately no clinical test that we can do to tell you what the efficiency of your fallopian tubes is. And that’s essentially why trying on your own and getting pregnant, regardless of whether you have a delivery or a miscarriage, teaches me that your fallopian tubes can at least pick up the egg. So with this testing if we intervene too soon, we might be committing you to doing very intense fertility medicine, the extreme of fertility medicine based on your fallopian tubes just spasming. Or we may be falsely reassuring you and telling you, “Oh, your fallopian tubes are fine,” when we actually don’t have any test of functionality. And so I typically reserved that testing for after you’ve tried on your own, except for maybe in extreme circumstances where you’ve had multiple surgeries or have multiple risk factors for extreme scarring. And that’s pretty rare. 

Dr. Acker: And I will add that on top of all that, the test really hurts. I mean, I can’t tell you how many patients I have moved to tears because it can be a very painful procedure.

So if somebody is one of your patients know they come to you and they say, I want to start trying to conceive and they have endometriosis, what sort of testing do you do, if any? What does that process look like before they try to conceive? 

Dr. Acker: Well, I’m a pretty old fashioned doctor. So the first thing is to sit down and talk to my patient, talk about her history, how old she was when she started her periods, what her periods are like, and those kinds of things. If again, I do a lot of presuming there’s a diagnosis. But I think, as Dr. Vaughn said, we don’t really know for sure until you try. So most of my patients who come to me and say, “I’m thinking of stopping my birth control and I’m going to try for pregnancy,” I’m going to say “Great, have at it, have fun practicing.” And, you know, your statistics, your chances of getting pregnant are extremely good. It’s not a hundred percent like we’re all taught in Sex Ed that if you have sex once, you’re going to end up pregnant, it’s nothing like that. But with time in a healthy patient, with a healthy partner, without any of those other conditions that can affect your ability to get pregnant. So I will have my patients start out with trying. 

So I think, I think after 6 months, 12 months, that’s when we sort of start the testing, sometimes we’ll do something noninvasive like, you know, patients can buy LH predictor kits over the counter. They can see if they’re ovulating. Some patients really like to take their temperatures and chart their basal body temperature. It helps them to feel in control of the process. So are a lot of less invasive things than  looking at the fallopian tubes. There’s a lot of ways to get some basic information. 

Dr. Vaughn: The question of whether or not you have endometriosis is likely one that at the beginning stage of treatment doesn’t necessarily need answering, because when we’re thinking about treatment and at spring, we treat every patient like they have underlying endometriosis and consider that as a high probability. And so the first thing is if you are a decent candidate for inseminations, you’re a reasonable age. There’s reasonable sperm quality. It’s worth trying that for a couple of months, depending on your overall family planning goals. If you’re doing IVF, there’s really not a lot of data to suggest that diagnosing you with endometriosis and doing surgical resection of endometriosis is going to improve your IVF outcomes, sometimes after multiple failed IVF cycles with a pretty strong suspicion of very extensive endometriosis. We might be considering surgical resection, but that’s in the minority of patients. The majority of patients will do fine with IVF and will not do better with IVF, with a known diagnosis and surgical resection. And it warrants saying that a surgical resection may actually risk your your outcome with IVF, because when we go to reset endometriosis and endometriosis is very sticky and it’s very hard to remove it without also removing some normal tissue, and if that tissue is in the ovary, then we actually will remove some of the potential eggs that we could stimulate to grow. 

And so, of course, it’s very individualized care. But my answer to this person asking this question is that you may or may not, it’s not really something we think of as coming and going. It’s something we think of as mild, moderate or severe. But we sort of treat everybody like they have it with the knowledge that IVF is a very good treatment for a lot of patients, especially because we think a lot of the dysfunction is that the level of the fallopian tube, there may be dysfunction at the level of every step, from ovulation to quality of egg to ability to implant. And so any time we can make there’s not a lot of data on how to affect these things but any time we can make any adjustment to try to improve physiologically what’s going on, we do and we do when we do IVF get a sense of things like egg quality based on embryo quality. We don’t want egg freezing. We have a hard time predicting which egg can become a baby. But we do get a sense of whether or not your infertility is going to be easier or harder to treat. And I would say if you’ve been trying for three years, it’s time. 

Dr. Acker: To close on a positive note, I would add that in my career, IVF has made such huge progress and women should know that. When I started out and we did these fertility evaluations and found an issue, or maybe somebody had unexplained infertility, we didn’t have a lot to offer. And now you have to remember that a lot of data that’s out there is kind of old fashioned data and it’s 20 or 30 years old statistics. Now we can offer so many alternatives in vitro, and in vitro has come so far, that success rates have really improved.

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