Causes & Treatment

The PCOS questions you are asking

Jessie Day, in partnership with TFP Fertility UK  |   21 Sep 2023

These are just nine of the questions you sent over on Insta this summer alone. Honestly, there are a billion, so let us know which aspects you’d like more info on, and we’ll put them back to Dr James Hopkisson, consultant gynaecologist and Medical Lead for TFP Fertility UK, with over 30 years of experience in fertility medicine, treatment and care. 

Dr Hopkisson also led our endometriosis tool kit deep-dive earlier this year – do check it out if you’re also looking for information on endo, fertility and routes to expert support and treatment. 

Back to PCOS, here are the questions you’re asking, and all the next steps to get support and treatment rolling.

1. Can I get pregnant with PCOS?

Yes, you can, but you may need help. One of the problems with PCOS is having an irregular cycle, which often means not ovulating. What we see in the ovaries of women with PCO (PCOS) is small follicles that have not gone on and developed, to ovulate.

So it’s a bit of a misnomer. These aren’t cysts. They’re small, unruptured follicles. And one of the things I get asked about is, can I have these cysts cut out and removed? My response is usually No, this is normal. You’ve got a very good ovarian reserve, lots of follicles there. When it comes to treatments for helping people to get pregnant, they can range from modifying lifestyle – maybe bringing your weight down – to drugs to boost ovulation, which may be in tablet form or injections.

Or if those don’t work, moving on to higher-level treatments like assisted conception and IVF. 

Watch now: Can I get pregnant with PCOS?

2. How do you know if you have PCOS?

There are a number of tests that we can do, to look at the causes of certain symptoms. I always start with taking a detailed history, and putting together a picture: 

  • When did your period start? 
  • How regular are your periods? 
  • What’s been happening with your weight over puberty, and on?

And then there are a number of investigations that we can do, usually including an ultrasound to look at the ovaries – this can be internal or abdominal. So there shouldn’t be a fear of going in to see your gynaecologist or doctor – your general practitioner – to organise a scan.

Additionally, there are a number of blood tests that can be done, to look at hormones that may indicate whether you have excess androgen or excess testosterone. We can do a small calculation with some of those hormone measurements to give you a calculation of something called the free androgen index. Certain numbers would suggest excess androgen, which is linked to polycystic ovarian syndrome. 

So don’t be afraid to go and ask for investigations and help with managing your symptoms, whether that’s for fertility or to regulate your cycles, or deal with skin problems, hair growth, etc.

How do you know if you have PCOS

3. Is PCOS easier to diagnose than other conditions, such as endometriosis?

Yes, I think it is. With endometriosis, one needs to do a laparoscopy to get a definitive diagnosis. 

With PCOS we can treat it based on symptoms, pelvic pain and cyclicity. Endometriosis is a very different disease with different implications for both quality of life and for fertility. PCOS is something you are born with – the genes you have can be expressed in different ways depending on your weight, on your general health, and it’s something that we can help you manage.

If somebody has excess androgen, there are cosmetic ways of dealing with that. And there are medications such as finasteride and spironolactone, that suppress androgens. You can’t take these, however, when trying to conceive. And if you are trying to conceive, there are ways of helping to boost ovulation. 

4. Do diet and nutrition impact PCOS?

Yes, I think a huge amount. The whole PCOS morphology and symptomatology is linked into insulin, insulin resistance and derangement of androgen production, which leads to an irregular cycle. These things are very-much impacted by nutrition, so having a healthy balanced diet is key. 

I’m often asked whether it’s best to have a low carbohydrate diet. And I think, more importantly, you have to consider how this will fit into your life. Any weight loss has to be controlled and sustainable. Dietitians are very good at helping you find the right way for you, and this may be adding in low-GI (low glycemic index) carbohydrates, fruit and veg, Omega 3, plus thinking about exercise and minimising stress. 

Long term health in PCOS is incredibly important, because there are high rates of type 2 diabetes connected with the syndrome. It’s estimated that about 50 percent of women with PCOS will go on to develop type 2 diabetes. 

Because of excess androgens being converted to weak oestrogens in PCOS, there’s also unfortunately an increased risk of cancers of the lining of the womb. As part of the PCOS picture, these are things that we can help control, with a healthy lifestyle.

5. Is it possible to be misdiagnosed with PCOS? And if so, why?

That’s a really difficult question. I think with most women’s health conditions, it’s usually more about a delay to diagnosis. I think people can just be given a diagnosis of PCOS if their team aren’t looking at their hormone profile correctly. 

But, absence of periods isn’t necessarily PCOS. There are other causes, and that’s where there can be some muddling. Ultimately, what we need to know is:

  • what the ovary is like
  • has the ovary got a high reserve? (which often happens in PCOS) 
  • hormone derangement concerns
  • is there a low reserve?

A few simple hormonal tests should be able to direct you to the appropriate diagnosis. 

PCOS long luteal phase

6. Is PCOS connected to having a long luteal phase?

Again, this is tricky! The luteal phase follows ovulation. The vast majority of women with PCOS with regular cycles are not ovulating. So I would say it’s more likely to be an absent luteal phase, that you’re not getting that progesterone rise to get the lining of the womb to change and thicken.

In the first stage of the luteal phase – when implantation can occur – there can be a derangement of the cycle. And that’s what the fertility drugs will correct, by boosting ovulation and potentially with the addition of a mid-cycle trigger, and then a normal luteal phase. 

So I’d say it’s not a defect, it’s not a long luteal phase, it’s a derangement of the whole cycle.

7. Is there a connection between a high antral follicle count and PCOS?

Women with PCOS will have a higher antral follicle count (AFC) that we can see on scan. They will also have higher levels of the marker AMH (anti mullerian hormone). So when we see somebody in-clinic with PCOS, those numbers will be higher and they will guide us as doctors in treatment planning. 

This is especially the case in an IVF program, because people with high levels of AMH and high antral follicle counts will have a higher chance of over-responding to fertility drugs and having a complication called ovarian hyperstimulation syndrome (OHSS).

There are strategies that we can use to lower this risk, such as the use of metformin. There are different regimes in an IVF program to minimise response, and the discomfort and harm that OHSS can bring. 

8. Do people with PCOS have more success with IVF, due to having more eggs?

IVF predominantly is a treatment that requires a good number of eggs. We have to balance our desire to get eggs with the risks of hyperstimulation syndrome. We know that the more eggs we get, the more eggs will fertilise, and the more embryos we’ll create. 

There are some concerns that egg quality in PCOS may be slightly lower. Often that is counteracted by the number of eggs that we get, but I think we have to look at the individual. Grouping people and saying patients with PCOS have a lower success rate is not really accurate.

The spectrum of symptoms and morphology of people with PCO varies from people who are very slim, with no periods to people who are overweight with chaotic bleeds. We’re putting together all of these people into one label. And certainly we’ll have different outcomes with different people depending on their own characteristics. That’s why it’s so important to individualise care.

That can include dietary care and advice, fertility advice, advice outside of fertility, finding a treatment that helps with the symptom that is causing your patient to have distress, worry, anxiety, and some of that may be psychological help as well. 

It’s a holistic approach and we mustn’t just concentrate on fertility when there are so many other things going on in the person’s life. 

High AFC with PCOS

9. Which is worse for fertility, PCOS or endometriosis?

I don’t think one can say which is ‘worse’. Endometriosis has a wide range of symptomatology, but also presentation. We grade endometriosis from stage 1 to stage 4, depending on the site, the amount of endometriosis, and it brings its own challenges. There isn’t a competition out there for which is the worst fertility diagnosis to have. We look at and try to structure an individualised plan, to overcome it. 

So if somebody has tubal damage with endometriosis, they go to IVF. If they have a low reserve because of ovarian disease in endometriosis, we can change the stimulation regimes to optimise egg yield. In PCO, we may struggle to get people to ovulate.

People may have to jump from ovulation induction into IVF, and the IVF program will have risks because of their high ovarian reserve in terms of minimising risks of OHSS. Some people will have immature eggs. Some people will have poorer egg quality. So it’s finding strategies for the individual.

And we learn as we go through treatment with both PCO with endometriosis, how to optimise care for each individual couple, as they come through. 

Next steps

Circling back to the importance of individualised care, TFP Fertility UK collectively focus on a truly personalised approach. For a tailored treatment plan, investigations and some answers, reach out to the team

And, remember to pop any more PCOS questions into our DMs on Insta. PCOS is a very real issue (and not just for September!) We’ll ensure you’re heard, and touch base with Dr Hopkisson and TFP Fertility UK to dig out the answers. 

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