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The Ultimate Guide To Infertility Caused by PCOS

February 10, 2017
eIVF Network

When I was diagnosed with polycystic ovary syndrome, in early adolescence, no one mentioned fertility concerns. Even if they had, I’d still have been more worried about the many other so-called “women’s issues” that PCOS often messes with: body hair, weight, and mood. As an adult, no doctor ever counseled me to freeze my eggs or prepare for pregnancy complications — even when I asked outright if I should. If you believe the message boards, PCOS is often touted as an (if not the) leading cause of infertility. Why the disconnect?

The truth is, there are far fewer solid facts out there about PCOS — and specifically, its role in fertility — than there are opinions, beliefs, and outright myths. And because we live in the age of Dr. Google, many of us with this diagnosis (*raises hand*) have encountered these murky not-quite-truths on the internet, leading to a lot of needless panics.

Consider this your antidote to all that. What we do know for sure about PCOS is that it manifests differently in everyone, so beware of anecdotes scoured from the message boards. We turned to four doctors who regularly treat patients with this syndrome, to create an essential, no-BS guide to PCOS and fertility. We don’t have all the answers because no one does. But for the common, most important questions on this issue, we’ll give you the real-deal rundown on everything we do know.

I’ve just been diagnosed with PCOS. What now?Welcome to the club! First, let’s cover some basics. PCOS is the most common endocrine disorder among women of reproductive age, affecting somewhere between 4% and 20% of women worldwide. But it’s also one of those standard conditions, like herpes, which goes undiagnosed in the majority of people who have it. One 2010 study of the prevalence found that nearly 70% of the 728 women interviewed had never been diagnosed up until they were interviewed about their symptoms for the study. Prevalence estimates vary by country and ethnicity (as can the symptoms), though it is documented virtually everywhere in the world, and has been noted in medical records as early as 1721.

Like any condition defined as a syndrome, PCOS is a collection of symptoms. The three most common symptoms are long-term absent or irregular periods (including multiple periods in one month), elevated androgen levels (androgens, such as testosterone, are sometimes called “male hormones,” though women have them, too), and cysts on the ovaries, appearing in an ultrasound. “If you have two out of three of those, we consider you as having PCOS,” says endocrinologist Rachel Pessah-Pollack, MD. But while these are the “classic” symptoms, this is confusing because there is no classic diagnosis of PCOS.

Typically, women aren’t diagnosed until one of these symptoms begins to affect their daily quality of life to such a degree that they wind up in a doctor’s office. The variability of the three hallmark signs makes PCOS tricky to recognize, even for a medical professional. For example, “many teenage or 20-something females have irregular periods,” Dr. Pollack says — far more than those with actual PCOS. Similarly, acne and facial hair (typical signs of elevated androgens) can be caused by other things (from other medical causes to ancestry). Finally, the cysts for which this syndrome is named only occur in an estimated 15% of women with PCOS.

When you are diagnosed, there’s no way of knowing how else it may manifest in your body and to what extent. Here are some other symptoms that may or may not coincide with PCOS:

– Insulin resistance (wherein the body does not respond appropriately to insulin, resulting in elevated blood sugar)– Sudden weight loss or weight gain (particularly weight gain in the midsection)– Mood swings or mood disorders such as anxiety and depression– Notable changes in appetite– Bloating after eating– Pelvic pain– Sleep apnea– Insomnia– Daytime fatigue– Dark patches on the skin– Skin tags– And yes, infertility

So yeah, fertility is just one concern of many.

On top of that, PCOS can happen at any age between puberty and menopause, and there’s no known cause. It may be genetic, though it may not be immediately evident in your family history because “it’s polygenetic,” explains Isaac Sasson, MD, Ph.D., an OB/GYN who specializes in reproductive endocrinology and infertility. “It’s not a single-gene disorder. It’s not like cystic fibrosis or sickle cell disease, where there’s one bad gene.” Rather, it involves some genes we all have, which, for some unknown reason, “aren’t working well together.”

It’s also possible that there are environmental factors at play, though evidence here is particularly unclear at this point. Looking online, you’ll find purported links between PCOS and everything from diet to occupation to education to household decor. Some sources may be more reputable than others, but none of these claims are firmly backed up by evidence — at least not yet. (Note that I haven’t linked to them because you shouldn’t read them. Do not fall this rabbit hole.)

Bottom line: “It’s not something that you’re going to cause within yourself. It’s not like an infectious disease. And just because you have PCOS, that doesn’t mean you’re going to pass it to the next generation,” Dr. Sasson says.

So, the first thing to do after a PCOS diagnosis? Remain calm. There were probably some frustrating symptoms that led you to your diagnosis, such as irregular periods maybe, so focus on working with your doctor to get a handle on those first. This diagnosis doesn’t mean you’re destined for a life of suffering, nor does it mean infertility is for sure in your future.

But, ahem, it’s called polycystic ovary syndrome. So fertility has to be a factor here, right?Not necessarily. PCOS is complicated AF, and there’s no way of knowing what your version of this syndrome is going to be like. Part of the reason fertility issues have become such a focal point is simply that the first doctors to identify PCOS just happened to be gynecologists, so historically, the related gynecological and reproductive issues have gotten the most attention.

See, for example, the name: “The whole syndrome got that name because of a gynecologic finding,” says Dianne Budd, MD, a physician specializing in endocrinology and metabolism. “But it’s not an appropriate name.” She points to the myriad symptoms involved, adding that one can often lead to another (insulin resistance can affect your weight which can affect your hormones, for example). In this way, PCOS can be thought of as a cycle, not a line that leads right back to your ovaries.

She’s not alone in this opinion (“PCOS is a terrible name,” Dr. Sasson says. Almost everyone we spoke to for this piece said something similar). Many in the medical community agree, pointing to the broad spectrum of symptoms, and specifically to the fact that the majority of women develop no ovarian cysts (Oh! And they’re not cysts! More on that later.) Some suggest there should, in fact, be two separate diagnoses: One for those whose symptoms are metabolic (such as insulin resistance and weight fluctuation), and another for those whose symptoms are reproductive (such as cysts and fertility problems). Some women may have both, but many will not.

Either way, remember that lousy names aside, your ovaries aren’t to blame — and they may be doing just fine, thankyouverymuch.

Great, but what if my PCOS does affect my ovaries — how exactly does that mess with my chances of getting pregnant?

We all know how babies are made. A woman produces an egg; egg meets sperm and blam.

Twist! We’re all wrong!

It turns out human reproduction is more complicated than that. To understand how PCOS puts a kink in things, you have to know what normally happens. So, here goes: Your ovaries are covered in follicles. “A follicle is a fancy name for an egg sac,” Dr. Sasson explains. “Each follicle has one egg in it, and typically a woman in, let’s say, [her] the early 30s, will have around 18 to 22 follicles available in a given month. One of them gets big — about 20 millimeters in size — and then all of the others dissolve and disappear. The big one gets released [to travel down the fallopian tubes to the uterus], and that’s her opportunity for pregnancy. So every month a woman releases one egg, but loses a whole group of them.” If you don’t get pregnant, then you’ll get your period, and the cycle begins with a new group of follicles.

When treating individual PCOS patients, “I do their ultrasound, and they have slight follicles,” that never developed fully, thanks to disrupted ovulation and menstruation, Dr. Sasson says. “They don’t have a big one that grows.” These many underdeveloped follicles are what may appear as many “cysts” on an ultrasound, though they’re not cysts at all.

Hormones, of course, are what regulate this cycle regularly. And so it’s the underlying hormonal dysfunction caused by PCOS that messes things up. “It’s not that [these women] are not producing an egg, but that they’re not growing their follicle,” Dr. Sasson says. Therefore the mature egg doesn’t land in the uterus, where it’s available for fertilization, allowing the process to continue. “They’re stuck at the starting line.”

The key to remember is that even if you have visible “cysts” on your ultrasound, that doesn’t mean you’ll have trouble getting pregnant. (Nor does it mean that if you don’t have “cysts,” you won’t have fertility difficulties.) There’s no data on how likely you are to get pregnant without medical intervention. “No one has followed a group of women with PCOS having unprotected sex and seeing how many people get pregnant on their own,” Dr. Sasson says. It is possible, but if you’re hoping to get pregnant soon, it couldn’t hurt to at least discuss with your doctor his or her opinion about your next steps.

Okay, but what if I’m having trouble getting pregnant without treatment. Is there any hope?Hell yes. The good news is that infertility treatment for women with PCOS is effective. Remember: The problem isn’t your eggs or your uterus. You just might need some help moving that egg. If that’s the case, your doctor will most likely prescribe a medication (like Clomid or Letrozole) to boost your follicle-stimulating hormone. If these drugs don’t work, you may move on to gonadotropins, which are hormonal injections that can stimulate ovulation. “The goal is just to get the eggs off the starting line,” Dr. Sasson says. “Because once they’re in a growing phase, the rest of the physiology should take over.”

If PCOS is the cause of your infertility, then these medications should do the trick. There’s no reason to assume you’ll have to move onto more harsh fertility treatments unless there are other factors also at play — which, of course, could be the case. Many women without PCOS need assistance getting pregnant, and men can have fertility issues too. If you’re still not getting pregnant, your doctor may investigate other potential causes and might suggest treatments like intrauterine insemination, which is when sperm is placed inside your uterus by a physician at just the right point in your cycle.

You may have read a lot about other fertility treatments, such as egg-freezing and in vitro fertilization (IVF), but neither of these directly address the cause of infertility with PCOS, and both come with a high cost and highly variable success rates. You are no more likely than any other patient to need them solely because you have PCOS. Though of course, IVF may be worth investigating down the road if you continue to have trouble.

But remember, effective treatment also still doesn’t mean next pregnancy. Even if you’ve gotten your follicles functioning, it could still take some time to get pregnant — and that’s true for everyone, as well. As Dr. Sasson points out, a 30-year-old woman with an entirely predictable menstrual cycle is about 20% likely to get pregnant in any given month. Fertility medications like Clomid and treatments such as IUI don’t mean you’ll get pregnant instantly. It just means you’ve leveled the playing field.

My doctor told me losing weight would help. Is that true?Weight loss is often touted as the cure-all for every symptom in every woman with PCOS, including infertility. But, as ever, it’s far more complicated than that.

Weight change is familiar with this syndrome. For some, PCOS results in unexplained weight loss, but it’s typically associated with weight gain (though again there’s a wide variance in stats here).

Furthermore, even women who don’t gain weight may have other symptoms usually seen in women of higher weights (like insulin resistance, one of the most common signs). Some research does indicate that, if weight gain is one of your PCOS symptoms, then weight loss may help improve your fertility or other symptoms. Then again, research also indicates that weight-loss attempts typically fail in the long-term. On top of that, Dr. Sasson adds, “Once you put on weight, it’s tough to lose it with PCOS.” Cool. Thanks, science.

But before you start feeling like you’re totally stuck, there’s a pretty high bright side here as well: In nearly all weight-related research of women with PCOS, exercise was an essential component. That factor alone seems to make a difference, whether or not you lose weight. The most recent study on this topic concluded that weight-loss and exercise — not only weight-loss due to exercise — can improve fertility in women with PCOS. This finding echoed other research pointing to the fact that exercise lowered insulin resistance without changes in weight. (That’s true for everyone, by the way — not just those with this syndrome.)

What this means is that you don’t have to become a slave to the scale to manage your PCOS and improve your odds of pregnancy; instead you can just make sure to exercise, which you should consider doing for a lot of other health reasons (improved mood and longer life are just two things that come to mind) anyway.

As Dianne Budd, MD, an endocrinologist in San Francisco, points out, weight is one of many symptoms of this syndrome — and one of the most difficult to treat directly. If you start by tackling another symptom, it may wind up having an impact on your weight, sure. For example, there’s a drug called metformin (which is commonly prescribed for women with PCOS) that can help improve insulin sensitivity, which may, in turn, lead to changes in your weight. Those potential weight changes may then impact your hormones, and therefore your ovulatory cycle. However, as with all things PCOS-related, it depends ongreat. For better or worse, it’s not as simple as lower weight = higher fertility, period. The drug has no direct impact on your reproductive system, nor does it guarantee weight loss. “Metformiidealfor women with PCOS that are insulin resistant,” Dr. Sasson adds. “But if you don’t have insulin resistance, it’s not going to help you.”

Point is, a doctor who focuses a lot on your weight is probably not looking at the entirety of your syndrome and how all of your symptoms work together. “If the doctor is telling you to lose weight, get a different doctor,” Dr. Budd says. “We all know that fails. Let’s talk about things that work.”

The doctor’s duty, she continues, is to help manage the hormones affecting your fertility. If you’re trying to get pregnant, prepare your body with healthy food and movement, the way anyone would. Also important, she adds: “Don’t overstress yourself.”

Don’t overstress myself? I feel like a freak.Listen, I hear you. For all the myriad symptoms tossed around with this diagnosis, one that rarely gets discussed is the emotional toll it can take.

Christiane Manzella, PhD, FT is the Clinical Director at The Seleni Institute, an organization focused on women’s reproductive and maternal mental health. For many women, she says, just being diagnosed with PCOS “creates a huge amount of stress and anxiety.” Infertility may be the primary fear they voice, but it often goes deeper than that. “The signs and symptoms of PCOS are so distinctive and distressing around the identity of a woman.”

From a social standpoint, fertility and traditional femininity have always been linked. For example, the same hormones that enable pregnancy also affect our appearance. That’s why, Dr. Manzella says, things like excessive facial hair can trigger shame and insecurity. Erratic periods can create a sense of isolation from other woman. Even hearing a friend mention PMS may trigger a knee-jerk mental comparison. “A woman with PCOS who has highly irregular periods already feels different from her other women friends who every month get a period,” says Dr. Manzella. “She thinks, ‘Well, I don’t have a clue when my next period is coming.’”

The threat of infertility is a blow to many women, but the general uncertainty that comes with PCOS may be the hardest symptom of all. “Uncertainty is one of the more difficult human experiences to go through,” says Dr. Manzella.

This underlying anxiety may seem like small potatoes in light of everything else. But it should not be discounted. Research indicates that PCOS alone may impact mental health — as can the strain of fertility struggles. Yes, there are many good reasons not to panic over PCOS. But it’s just as important to recognize and validate your emotional experience, and seek emotional support (perhaps from a professional), particularly when you’re trying to get pregnant. That’s not because you’re a freak, but because you’re a human.

Dr. Manzella points out that — just like PCOS — infertility and the resulting emotions are common issues that sadly don’t get talked about enough. “I think it can be very helpful to normalize these ups and downs, hopes and disappointments,” she says. “These are expected and not unusual experiences, so you’re not alone.”

If you’re worried, that’s normal. But here’s one undeniable truth to remember: Despite its reputation, PCOS is pretty normal, too.

More Articles on Fertility Support: 

Is She Brave?

9 Smart Strategies for Working During IVF

How My Struggle With Infertility Helped Me Find Myself


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