We are thrilled that This Morning decided to do a segment on PCOS today with Dr Shahzadi Harper and to welcome all our new followers. Considering the limited amount of time she was given she gave a decent general overview of the condition and some of the first-line management and treatment options given to patients but didn’t have the time to be more specific and in-depth.
As those with PCOS, we know that it isn’t really that simple, so we’re going to dig a little deeper into what was discussed in the clip on This Morning’s Facebook page.
How many people does it affect
The caption to go with the Facebook post states 1 in 5 women in the UK have PCOS and unfortunately, this isn’t accurate. In 2018 a set of International Guidelines for PCOS were published that looked at lots of data from across the world to try and pull together the best diagnosis, medical treatment and long term management guidelines for those with the condition. The group found that across the world the condition is thought to affect
‘8-13% of reproductive-aged women with up to 70% of affected women remaining undiagnosed’ (page 6).
That still leaves us in the area of 1 in 10 and we reached out to our medical advisor Professor Stephen Franks to clarify it for us:
“1 in 10 is nearer the mark. 1 in 5 refers to the proportion of women in the general population who may have polycystic ovaries but not necessarily any symptoms or signs of PCOS”
So that neatly brings us to…
The first thing we heard in the clip was a quick rundown of PCOS symptoms, things such as irregular cycles, acne, male pattern hair growth and hair loss. No one person with PCOS will experience the condition in the same way or to the same degree. Amongst the Trustee team alone at Verity (there are 5 of us) some struggle with weight more than others, a couple of us with acne, a couple with male pattern hair growth, some have absent periods and others have had extended periods of bleeding; basically, we’re all different.
When it comes to being diagnosed with PCOS you only need two of the following three things:
- Irregular or no ovulation (this could also present as no periods)
- Excess androgens and/or physical signs of this (this can present as symptoms such as acne, male pattern hair growth, hair loss and difficulty losing weight)
- Polycystic ovaries (in PCOS these are known as follicular or functional cysts and must not be mistaken for ovarian cysts which are a different thing)
As you may have now worked out the name of the condition is a little misleading as you don’t actually have to have polycystic ovaries to be diagnosed and having them doesn’t necessarily mean that you have the syndrome. PCOS is actually an Endocrine disorder (that’s a lovely fancy word for hormones!). In our bodies, there is an imbalance of particular hormones that lead to our symptoms. Hormones control much of the signalling going on inside us telling us when we’re hungry, when to wake up, when to have a period, when to be stressed and so on. Because of this, there have been discussions for the past few years about renaming the condition but there has been no agreement as to what the new name should be.
The next point that Dr Harper made is spot on: having PCOS does not automatically make you infertile. As a group, we do struggle more than the general population simply because our ovulation tends to be less regular or absent; even with regular ovulation, the chance of becoming pregnant isn’t guaranteed. According to the NHS website out of 100 couples trying to become pregnant, only 84 will be successful in a year. Regardless of PCOS, an average of 1 in 7 couples in the UK will face fertility problems and it’s not always down to the woman’s body. The good news is that data suggests we have later menopause and therefore more sustained rates of pregnancy at an older age.
If you are someone with PCOS who has regular menstrual bleeds it also doesn’t necessarily mean that you are ovulating so if you aren’t falling pregnant naturally it’s important to check in with your GP and get a referral to secondary care such as a reproductive endocrinologist (that’s what Prof Steve Franks is!) who can do more tests and intervention to support you in becoming pregnant.
Cure and treatment
As Ruth points out in the ITV clip, there is no cure for PCOS. We still don’t know exactly what causes it with research being done into areas like genetics, sleep patterns, the general endocrine system and more recently the gut microbiome. What we do know is that there are a few tried and tested ways of managing the symptoms of the condition to improve our quality of life.
The first thing mentioned is losing weight. We know, we know! Many of us have heard this at diagnosis, in follow up appointments or, in the case of one our trustees: ‘Your weight is fine so just keep doing what you’re doing, there isn’t anything else I can do until you want to conceive’.
As much as this is an area that causes many of us distress and frustration the study data does back it up. In the International Guidelines, the analysis of data from many studies supports the evidence that
‘in women with PCOS and excess weight, lifestyle interventions which reduced weight by as little as 5% of total body weight’ (page 73)
had a positive impact on their symptoms. What we as a community find the most frustrating about being told to lose weight is either there is no direction on how to do so effectively or in the case of lean women with PCOS it doesn’t apply and other symptom management options aren’t always offered.
For those looking to manage their weight, however, the International Guidelines do offer specific diet and lifestyle guidance and this can be found on pages 77-81.
The second thing mentioned was going on the combined oral contraceptive pill. Depending on what symptoms you are trying to manage the pill may be a good option for you. Where it won’t ‘fix’ or ‘cure’ the underlying symptoms of PCOS it can help in symptom management particularly around acne and hirsutism (that’s male pattern hair growth) and in making sure you have a regular bleed and shed your endometrial (womb) lining. Shedding the lining is important to do regularly and it’s recommended that you have 3-4 bleeds a year to reduce the risk of secondary complications such as endometrial cancer. It’s also important to note that if you take the mini, or progesterone-only pill that this prevents the endometrial lining from building up and also reduces the risk of secondary complications. As with any long term management option, this does need regular review by a healthcare professional and as your life stage changes the way you manage your PCOS may change too.
We recently wrote another article about the pill, it’s current UK shortage and the impact this could have on the PCOS community.
The last thing mentioned was a drug called clomifene. Clomifene is commonly used to increase ovulation and is usually only prescribed in secondary care after thorough investigations into your fertility or lack of fertility. Clomifene in itself carries certain risks and so should be taken under the care of a medical professional. It isn’t the only option and each person will be treated individually by their healthcare provider based on their test results. The International Guidelines have a whole chapter on the treatment of Infertility which starts on page 100.
That was a lot to get through and we haven’t even scraped the surface of PCOS and all the possible treatment and management options. We would love it if This Morning were to cover PCOS again in a bigger time slot so that it can be discussed more in-depth and with more information. Why not help us do that by sending them this article?
If you’d like to read more about PCOS then head over to the main section of our website.
You can read our PCOS myth busters to find out about common misconceptions.
If you want to meet others with the condition then check our local group’s page.
Why not help us raise awareness of the condition and improve the lives of yourself and others with PCOS by volunteering? We are run entirely by volunteers on donated funds and can always do with the extra help.