Knocked Up Podcast - PCOS: the good, the bad and the ugly
PCOS isn’t all bad news. We explore the surprising upsides, the hidden challenges, and what women can do to take control of their health and fertility.
When you hear “PCOS”, it’s easy to think only of the negatives. But the story is far more complex. From why women with PCOS can actually have higher egg counts, to the fertility myths that cause unnecessary fear, this episode breaks down the good, the bad and the truly misunderstoodPCOS - good, bad ugly.
We also look at the practical side — how lifestyle, medical support and even new treatments can help women take back control of their symptoms and long-term health. If you’ve ever wondered whether PCOS means infertility, or how to future-proof your fertility and wellbeing, this conversation is for you
TRANSCRIPT
Jordi Morrison: Hello and welcome to Knocked Up, the podcast about fertility and women's health. You are joined, as always, by me, Jordi Morrison, and Dr. Raelia Lew, CREI Fertility Specialist. Welcome, Raelia.
Dr. Raelia Lew: Hi, Jordi.
Jordi Morrison: And we're joined today by Dr. Tzipporah Ben-Harim. Welcome, Tzippi.
Dr. Tzipporah Ben-Harim: Morning. Thank you for having me.
Jordi Morrison: Tzippi, you're a very experienced gynaecologist and, Raelia, a fertility specialist. Today we are talking about polycystic ovarian syndrome. The good, the bad, the ugly. Is that what we're saying?
Dr. Raelia Lew: That's right. We wanted to focus on the good as well as other aspects because there are some advantages that women do have when they have polycystic ovaries.
Jordi Morrison: We've done many episodes on PCOS before, but Tzippi, for our new listeners, could you just give us in a couple of lines, what is PCOS?
Dr. Tzipporah Ben-Harim: PCOS is an endocrine condition and a metabolic condition in which women are being diagnosed with two out of three criteria. It would be the ultrasound appearance, issues with the appearance, and symptoms and signs of excess androgens. So androgens are the male hormones, though remember that women have androgen hormones as well. We have testosterone in lower amounts compared to men, but we do have testosterone.
Jordi Morrison: And the reason why I wanted to talk about the positives is because we so often hear about the negatives of PCOS. In terms of PCOS being a positive, what are some of the advantages?
Dr. Raelia Lew: I would say that my patients with PCOS have a high egg count compared to my patients without PCOS. One of the measures that we look at in fertility is a hormone called the AMH or anti-Müllerian hormone. And actually in the most up-to-date guideline on PCOS diagnosis and management that was published by the Jean Hailes Foundation in collaboration with Monash University, we have seen it published that AMH is now a criteria that can be used for the diagnosis of PCOS when it is high, even in an adolescent population. And that is helpful because when you look at very young women, ovaries can often look what we would classify as polycystic on ultrasound criteria because that can be normal when we're young. We have a high egg count relative to our later egg count as women's egg counts decline over the course of our lifetime. So it can be a kind of confusing criteria when you have a young patient and you think they have PCOS to rely on an ultrasound only.
One of the things that we see in IVF and in infertility medicine is that quite often there's more than one reason acting together that people need help to get pregnant. If PCOS is the only reason that somebody needs help to get pregnant, they have open fallopian tubes, normal anatomy, partner has healthy sperm, and they have good egg quality, then first-line fertility management is usually conservative ovulation induction. Or even modification of diet and lifestyle alone, which might help someone to more regularly release an egg. Because not ovulating regularly and not having regular cycles is the main reason for someone in that circumstance with PCOS to have trouble getting pregnant. And once you regulate their ovulation, the chance would be the same as anyone else's.
So one thing I would say is I've seen a load of women over the years who have been scared by a diagnosis of PCOS and sometimes told by even a health professional of some kind that they will be infertile and struggle to have a baby and definitely require IVF. And in my experience, that's just not true and that women can actually be very fertile with PCOS once they're ovulating.
Jordi Morrison: Because they have so many eggs?
Dr. Raelia Lew: No, just because there's not necessarily anything else stopping them. And once we get their PCOS under control, they have the same chance as anyone else. I mean, having lots of eggs is good from an IVF perspective. If someone needs IVF, relative to someone else, if you can collect more eggs for them in an egg retrieval, they're going to have a better chance of ultimately having one or more children from the IVF treatment. Because not every egg is a good egg, not every embryo will develop normally and not every embryo transfer in IVF sadly results in the birth of a child. But we also have a concept in IVF that is called the cumulative pregnancy rate and that means the chance of getting pregnant overall with the transfer of all embryos that are created in an IVF treatment. And if someone with PCOS has more eggs, then they will have more embryos on average and therefore they will have a better cumulative pregnancy rate from an IVF cycle compared to someone who has a lower egg number. Now that's not always true in that egg quality comes into it and you can have a very high number of poor quality eggs. And that happens to women with PCOS as they age. So they still at age 40 might have a lot of eggs left compared to the average person, but it doesn't actually mean those eggs are of any better quality.
But I would say that an advantage of PCOS is that we can work on metabolic health and we can alter our metabolic future by making sure we are controlling weight and metabolism factors like diabetes and insulin resistance through diet, lifestyle and medication. And if we correct for those things, having a high egg count in IVF is actually advantageous.
So the bad side of having a high egg count in IVF is that it means a patient, compared to other patients, is at high risk of medical complications of IVF. An example that comes to mind is hyperstimulation syndrome. So ovarian hyperstimulation is a syndrome that is unique to using IVF style medications. It's not something that happens in nature. Generally speaking, one egg is developed and releases in a menstrual cycle to give one opportunity for a woman to conceive in that cycle. In IVF, we often give hormones, specifically follicle stimulating hormone in one of its forms, to encourage multiple eggs to ripen simultaneously so we can go and get them. If too many eggs ripen in the same cycle and we use classical IVF, then the woman may be at risk of hyperstimulating. And what that means is that multiple follicles develop, they create hormones. So it's not the hormone being injected that causes this, it's the hormones that are being made in the body in response to that hormone. And if a person has what's called an HCG or a pregnancy hormone trigger medicine, she can develop hyperstimulation syndrome in response to that, where the multiple follicles that have an egg inside release that egg, or that egg might be collected at an egg collection. The follicles then transform into what's called a corpus luteum, which is a progesterone and vasomotor factor-producing cyst on the ovary.
And its job in nature is to support a pregnancy. But if you have many of them acting together, they cause a lot of bloating, fluid accumulation, and they can cause relative dehydration in the blood vessels and fluid accumulating on the tummy, around the heart, even in the lungs. They can put you at an increased risk of having a blood clot. They can put you in a very uncomfortable situation, and in some circumstances, a life-threatening situation. And it's very, very serious and very, very dangerous. And in years past, when IVF was at an earlier stage of development, it used to happen much more often than it does now.
Quite happily, in the over 10 years that I've been practising as a fertility specialist, I haven't had a single patient admitted to intensive care under my care with hyperstimulation. I have had the odd patient have a milder form where they required hospitalisation and care for several days in hospital before they got better, but I haven't had any of those very, very serious cases under my watch. And the reason for that is that we are very conservative compared to past IVF doctors, really from a couple of different perspectives. So one is that we are very good at freezing embryos and we're not scared to do it. So we're not worried that if we don't put an embryo back and try and get someone pregnant immediately, that they'll not have another chance. Actually, sometimes in PCOS, frozen embryo transfers even do better than fresh embryo transfers when you look at success rates. So we actually want to freeze the embryos. If we have that mindset of a freeze-first philosophy, and we've got some videos about that on our Women's Health Melbourne website that listeners can refer to, but if we freeze first, we can use more modern IVF medications that don't have the same risk of hyperstimulation syndrome. And in PCOS, that actually gives great advantage because it allows us to aim for a higher number of eggs collected compared to past practice and still keep our patients safe from hyperstimulation. And thereby realise those goals for our patients with PCOS with a freeze-first philosophy. So it can actually help realise those advantages without incurring those disadvantages for our patients with PCOS who do ultimately need IVF.
Jordi Morrison: We mentioned earlier about more androgens. So that is what we would think of as being testosterone. So if a woman has more testosterone, what are the advantages of that? Are they going to be stronger? Are they going to be more muscly?
Dr. Raelia Lew: Well, we do sometimes use testosterone as a therapy for women in some circumstances. It's quite commonly used in menopause as a therapy to improve women's libido, their energy level and their sex drive from a physical as well as psychological perspective. Those are advantages of testosterone. There are also some characteristics of testosterone, being assertive, being a go-getter, being driven. And often these are, when you look at the male-female divide, characteristics that you kind of consider more male characteristics. So look, females do have milder impacts of that hormone in those directions.
Some of the other virilising male characteristics can actually be side effects of testosterone. So on the other side, you can have acne, you can have excess hair growth in places women tend not to want it, like on the chin, around the nipples, on the chest, on the back. So these are places women do not want hair as a general rule. You can also have other side effects of testosterone that we don't tend to see women with PCOS complaining of, like voice deepening, but we do sometimes worry about people who take testosterone as a replacement therapy. We often do warn of this as a potential side effect. One related side effect of high androgens that women definitely don't love is hair loss from the head and sometimes male pattern hair loss, which can be very distressing for a woman. So while there might be some positives of having a high testosterone, there's also potentially some negatives there as well.
Jordi Morrison: Tzippi, you have a lot of menopause patients. Do you find that your patients who have PCOS will go into menopause later?
Dr. Tzipporah Ben-Harim: Not necessarily. The age of menopause is influenced by quite a few things. One of them would be genetics. So one of the first questions I'll ask would be, when did your mum go through menopause? When did your sister go through menopause? The other things that would be contributing would be some lifestyle factors. So we know that smoking brings menopause forward. Some surgeries, so having a hysterectomy will also bring forward menopause by a year or two. The other thing would be that the few years before menopause are the perimenopause, in which women start feeling symptomatic.
And I wanted to make a comment about the AMH as part of the criteria for PCOS. This is a huge change. So in the past, we used to say that we can't make a diagnosis of PCOS in teenagers, that only eight years from starting having periods, from menarche, we can make the diagnosis. Because the difficulty is that we know that having lots of follicles is very common in this age group. Acne is very common in this age group. So it's very tricky to make the diagnosis.
Dr. Raelia Lew: Tzippi, can I just interrupt there? You said eight years from menarche. What is the average age of menarche now?
Dr. Tzipporah Ben-Harim: So it's 11 to 12. It has been going down, and we're saying that in Western countries it's probably lower than that, but still 11 to 12 would be the average.
Dr. Raelia Lew: So previously PCOS couldn't be diagnosed before you were 19 or 20. Was that the guideline?
Dr. Tzipporah Ben-Harim: Correct. The other thing about symptoms and signs of hyperandrogenism, that also depends on ethnicity. So in some parts of the world, women have more hair and that could be a normal variant. And in some other parts of the world, women with quite high levels of androgens can still have very clear skin with no acne, minimal hair. So the sensitivity to testosterone varies between different ethnicities.
Jordi Morrison: So interesting how it shows differently.
Dr. Tzipporah Ben-Harim: Yeah, and that's why PCOS is kind of called PCOS. It's a syndrome, and anything that's a syndrome has a variable presentation. It's not always the same or easy to diagnose.
Dr. Raelia Lew: And sometimes we see patients who have had a diagnosis of PCOS and they come and see me for fertility help, particularly later in life. And you say, well, your ovaries aren't polycystic, your AMH isn't high. It doesn't look like you have PCOS right now. That can change as well.
I guess we should touch on egg freezing for PCOS. So egg freezing is something that can be done by any woman to keep eggs from when she was younger so that when she's older, if she has trouble getting pregnant or she wants to have a larger family but start a bit later on, she can use her younger eggs to get pregnant. It's a great technology. Sometimes AMH as a criteria can be falsely reassuring. And I would say probably in PCOS, one concern about AMH is that because it is high and that's considered a positive, it can be falsely reassuring because people who have PCOS still have declining egg number and egg quality as they get older.
Zippy, do you have any comments on that?
Dr. Tzipporah Ben-Harim: I would recommend on egg freezing, not just based on AMH in women with PCOS, because we know that the quality will go down and it feels like looks are deceiving. We'll do a scan, we'll say, oh, there are lots of follicles, but this is falsely reassuring because we know that the chances of successful IVF, for example, the major predicting factor is still age.
Dr. Raelia Lew: That's right. You can have a high number of poor quality eggs. So while quality is definitely the most important factor and quantity is a relative advantage, it's not a saviour in IVF to have a high number of eggs if you have a high number of poor quality eggs.
I guess that's why we talk about how the AMH test, and it's really important to have a holistic assessment of your entire context. So when it comes to fertility, when it comes to family planning, and when it comes to future proofing, it's really important to take everything into account, not just one factor, because fertility is always, always multifactorial.
So one really important positive of PCOS is that it is a condition over which we can exercise moderation and change, not just one aspect of health. And definitely with PCOS, one thing that women can really take on board is that you have some power over your PCOS. By controlling your diet, your lifestyle, your weight, your exercise, your choice of medications and supplements, you can take control of your symptoms. And we now have really great medications that can help women get control of their weight under a medically assisted framework, and that has helped so many patients with PCOS that I've seen really get control over something that's a bit out of control. Women with PCOS find it hard to lose weight and easy to gain weight because that is what their hormones influence, but once you get control you can maintain it. So it's getting control that can be the hardest part. But once you get control, maintenance is easier than getting control in the first place.
And so particularly we've seen a lot of changes with the GLP-1 agonist medications that women can utilise with great success. Now, in a fertility context, those medications are not suitable to take while you're trying to get pregnant. But what I have seen is that with supervised use and a long-term plan, they can be used in the short term to gain control and then we can work with patients to maintain control in a way that's safe for pregnancy. So that's really quite a big positive because you can totally take control of this and change your future. And we know that it not only changes your future in terms of your chance of having a baby, but it also changes your future in terms of your cardiovascular risk and general health for later life.
Dr. Tzipporah Ben-Harim: Absolutely. Just remember, back to running, this is a marathon. We're not sprinting. We need to make changes now that will have impact on our fertility, but also on our long-term health.
Jordi Morrison: To support Knocked Up, leave us a review or recommend to a friend. Join us on Instagram @knockeduppodcast and join Raelia @drraelialew. And email us your questions to podcast@womenshealthmelbourne.com.au.
Hosted by Dr Raelia Lew and Jordi Morrison
Dr Raelia Lew is a RANZCOG Board Certified CREI Fertility specialist, Gynaecologist and the Director of Women’s Health Melbourne.
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Have a question about women's health? Is there a specific topic you'd like us to cover? Email podcast@womenshealthmelbourne.com.au. We keep all requests anonymous.