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Programme 8. - Polycystic Ovary Syndrome
RADIO 4
THURSDAY 10/01/08 1500-1530
PRESENTER:
BARBARA MYERS
CONTRIBUTORS:
PROFESSOR ADAM BALEN
PRODUCER:
NOT CHECKED AS BROADCAST
MYERS
Hello. It's a major cause of female infertility. If it's not properly managed it can lead to other serious health problems such as heart disease and diabetes. But it's often the effect it has on the appearance that prompts women to seek treatment for polycystic ovary syndrome, our topic today.
Acne, unwanted hair and weight gain are all part of this complex syndrome, which is probably best described as an underlying disruption of hormone production. Well if you're beginning to recognise the picture you might well have questions about diagnosis and treatment to put to our expert in the studio today. He's Adam Balen, he's professor of reproductive medicine at Leeds.
We've got a worried grandma in the first instance, she's in Merseyside, and is wondering whether her granddaughter may have this condition. What makes you worried?
WORRIED GRANDMA
Yes hello. My granddaughter started her periods at 11 and were irregular, as they often are, and then when she was 16 it was still ongoing and she was gaining weight steadily. Nothing happened on her diet, staying with me, it went on. Saw the doctor, had the test and an ultrasound scan, had first the blood tests and nothing was found but nothing was pursued. It's gone on like that, she still has cramps, still has irregular periods, her weight - well she's a size 20 now and is only 20 years old. So we're all a bit worried. Can we go back to the doctor?
MYERS
Well you can make a start by talking to our doctor in the studio today. Adam, would you be a little bit concerned as this grandma is?
BALEN
I certainly would, I think it would be very important to go back to your doctor and ask for your granddaughter to be re-checked from the point of view of measuring her hormones. Polycystic ovary syndrome is the commonest reason for young women to have irregular periods, there are some other causes, but about 80/90% of young women, such as your granddaughter, will have polycystic ovary syndrome. Sometimes the hormones are in the normal range when they're first measured but there's a constellation of symptoms and other tests that you can do to make the diagnosis. But of course the most important thing for your granddaughter is then to ensure that she's given appropriate advice and some management plan.
MYERS
What is the value of making sure you get a diagnosis and perhaps get one early on because this is a condition that I guess can come on from puberty in fact?
BALEN
Indeed, I mean polycystic ovary syndrome is there for life, it's important to have the diagnosis so that you can have a plan for the management of your whole life but it can cause distressing symptoms ranging from the menstrual cycle disturbance, the cosmetic problems of unwanted hair growth and acne, sometimes even thinning of the hair on the head and then when fertility is a concern if something hasn't been done to try and put in place a healthy lifestyle then the situation can be far worse.
MYERS
And as you've already pointed out weight gain is something that's a real concern for you if your granddaughter is 20 stone or more and that is a real concern is it not Adam?
BALEN
Indeed because not only does it have an effect on the way the ovaries work, it has a number of other effects on metabolism and presents increased risk for disease later on in life such as type II diabetes and heart disease.
MYERS
Back to the doctor then. Thank you very much for your call. We'll go to Warwick, if we may, where we've got a caller waiting - Maria - and Maria I think has been recently diagnosed with polycystic ovary syndrome and put on the pill and you're wondering why, is that the case Maria?
MARIA
I'm not on the pill on the minute, yeah I was recently diagnosed. My periods have been very irregular since I was 13 and it's only recently that I've had kind of the blood test and then the ultrasound done. My doctor has recommended that I go on the pill and I was just wondering if it was actually necessary.
MYERS
Right, well obviously you've done the right thing by going and getting tested for this but what about this recommendation to go on the pill, why would that be relevant Adam?
BALEN
Yes hello Maria, I think that's a very good question. The real issue is how often are you having your periods because women with polycystic ovary syndrome who go for a long period of time without having any menstrual bleeds do run the risk of getting abnormal thickening of the lining of the womb and that's because if you're not having regular periods you won't be ovulating regularly and your ovaries will produce oestrogen without the progesterone that causes the period to occur. And oestrogen on its own, over a long period of time, can cause abnormal thickening of the lining of the womb and in some cases can even lead to cancer of the lining of the womb. And that's why it's important to have a bleed at least once every three months or so. Now that can easily be achieved by the pill, which gives a monthly cycle but there are other treatments that can protect the lining of the womb.
MYERS
So is that an explanation that you didn't necessarily get when the doctor recommended going on the pill?
MARIA
No I didn't really get much help, I mean I did get kind of transferred but it was kind of that's all that was told to me. Most of the research I've done myself kind of on the internet trying to find out bits of information about it.
MYERS
Well that and of course phoning us today, so thank you for doing that. But is there an issue here about information and perhaps even perhaps a real understanding of this condition, it's relatively common should GPs not be very well up with this?
BALEN
Yes I think that's a very good point. And it is unfortunately the case that because polycystic ovary syndrome is a mixed bag of signs and symptoms it can be difficult to diagnose, it can present in all sorts of different ways and therefore does cause confusion. Although I think it's quite straightforward to take a simplistic approach, a practical approach, make the diagnosis and absolutely important to provide appropriate information to women who may be diagnosed with the condition so that they know what to expect long term and know how to take steps themselves to help manage it.
MYERS
And although as you said there's perhaps a complexity of signs and symptoms, each one of them can be dealt with and should be dealt with?
BALEN
Yes indeed.
MYERS
Okay, let's go to Claire and see what her signs and symptoms are, she's been diagnosed. Your question arising Claire?
CLAIRE
Yeah hi. Well I was diagnosed about eight years ago. My periods stopped for a certain time and I had alopecia when I was 13 and things like that but nothing was picked up on. Until I finally went to the doctors and they still seemed to not really know anything about it. I was put on dianette and I was on that I think a long time, longer than I should have been. And dianette had a very high oestrogen level and so I was on that for a while and then I lost a lot of weight - an enormous amount of weight and then my lifestyle became healthier. And now I've been on yasmin pills, which is - it has less oestrogen than dianette. But I mean I have my periods every month now and I've been on yasmin for a few years. And now I'm sort of just thinking now in the future if I did wish to get pregnant what the likelihood of that is because I'm not sort of ready to get pregnant at the moment but in the future, obviously now I seem to be getting regular periods but I don't know how much of that will stop if I suddenly stop taking yasmin because I haven't taken a break on the pill.
MYERS
Okay over to our expert because this is obviously quite - can get quite complex but let's find a simple way through it, what are the chances of Claire, when she's good and ready, getting pregnant?
BALEN
Hello Claire, I mean you've been given two types of contraceptive pill - dianette and now yasmin - which have given you regular periods. I mean the first thing to say you've done fantastically well to have lost so much weight and to have improved your lifestyle. The only real way of knowing whether or what your current fertility is would be to stop the yasmin and see what's happening to your natural cycle, you may find if you've achieved a significant weight reduction that you will have a more regular natural cycle. And you'd know within two or three months whether that's the case. And at the same time you could have an up-to-date assessment of your hormones, which of course can't really be measured whilst you're taking yasmin.
CLAIRE
Okay, just let the other listeners know that the two previous callers - I mean I did have a lot of excess body hair and like I say alopecia - I had a lot of the symptoms - and they did go away once I did start taking the pill, that did seem to work for me.
MYERS
Well thank you for pointing out that Claire, that's helpful, but if I may I'd like to read an e-mail which sort of says the opposite. This is a lady who's 31, has PCOS and she's very embarrassed to talk about it because she fears that her friends and colleagues, if she mentions it, will find out that she's got a very hairy chest and back, it's sprouting on her face and she says she tried waxing the hair but the follicles bled. She says the pill didn't help her and she is really wondering what, if anything, she can do, she's obviously rather distressed and understandably so. So Adam how necessary is it - as it were - is that hairiness is part of this complex and if you are hairy what can you do about it?
BALEN
Unwanted hair growth causes huge psychological distress, understandably, so and has a major effect on quality of life and causes - is associated with depression and affects women's ability to be seen in public, to go exercising in the gym or swimming and doing all the things that are required to maintain a healthy lifestyle, so it can be a major problem. Huge differences in the amount of bodily hair that women can have, it depends upon hair colour, racial differences as well. Claire was on dianette and yasmin, which are two contraceptive pills that have specific components that can combat the unwanted hair growth, which maybe why she benefited and there are other pills which may not be so effective. Waxing is an approach but there are many other ways to remove unwanted hair, such as electrolysis, laser treatment, there are ointments such as - there's an ointment called vaniqa, which can be effective and there are other drugs in addition to the combined oral contraceptive pill that can suppress unwanted hair growth. So there's a huge range of options and I would suggest that if one treatment hasn't worked it's important to see a specialist and see if something else can help. The other thing to say is that it can take six to nine months to see any improvement, so you have to persevere.
MYERS
Thanks for that. Now Claire was talking about what are her chances of being fertile or otherwise, Lucy has tried, I think, and found that she is being - well it's difficult, she can't get pregnant, Lucy what's your story with PCOS and trying to get pregnant? Are you with us Lucy? No she may not be with us. No she's gone - she's gone for the moment. Perhaps you could explain Adam in general terms what is the difficulty with trying to become pregnant, what's going on in the body within the ovaries in terms of this polycystic ovary syndrome and possibly leading to infertility or difficulties?
BALEN
Okay. Essentially the ovary produces a number of hormones. The hormone that has to be produced is testosterone, which many people think of as a male hormone but in fact all women make testosterone because testosterone gets converted to oestrogen, which is the main female hormone. Women with polycystic ovary syndrome produce too much testosterone in the ovary, that can prevent the egg containing cyst, which we call a follicle, from growing and that's why you have lots of these little cysts, hence the name polycystic ovary. And so the high levels of testosterone can inhibit the normal growth of the egg containing follicles and cause the skin manifestations of unwanted hair growth and acne as well. Now depending upon the severity of the hormonal imbalance depends how often a woman with PCOS may be having periods and if she's having infrequent periods she'll be having infrequent ovulations. And that's when she'll need to be seen by a fertility specialist and be given appropriate stimulation to her ovaries and there are a number of drugs that can be used to stimulate regular ovulation.
MYERS
Well that's a nice prelude, I think we've got Lucy back and she can put her particular point to us. So you're having difficulty are you Lucy in getting pregnant?
LUCY
Yes that's correct.
MYERS
And what advice have you been given or what if anything have you tried?
LUCY
Well I went to see a doctor a few years ago who did an ovulation test on me, well it was actually after our first year of trying to conceive. I know that actually I am ovulating and he suggested just eating healthily, cutting down sort of additives in food, that type of thing and just trying to eat sort of organic foods and keeping the weight down and trying to get fit. And trying to lose weight and all those sorts of things which I have desperately tried. But it's now two years now and there's not been any success and I didn't know if there was anything I could try to sort of help the process along?
MYERS
Well you've got an audience with a professor of reproductive medicine so hopefully he's got some ideas of something you could try. Adam.
BALEN
Hello Lucy. I'm sorry you're having all these problems. I mean I think it would be very important for you to see a fertility specialist to get a full investigation and if you say you're having regular periods then you are likely to be ovulating regularly. You need to have other tests, such as to check that your fallopian tubes are open, your partner needs to have a sperm test, and some people have what we call unexplained reduced fertility for which you can still receive fertility treatments to boost your fertility if necessary. You mention that you were struggling with your weight - are you particularly overweight?
LUCY
I'm not hugely overweight but I am overweight, I would say probably a good two stone overweight which I know is a symptom some people have with PCOS but you know I've tried everything, sort of diets and gym and I'm members of gym and I'm constantly on diets and the weight doesn't seem to go but I have no other symptoms associated with the PCOS which I'm very lucky from that respect it's just obviously the fertility and the weight that's the main problem that I'm having.
MYERS
Adam, is there a connection with the sub-fertility and the weight?
BALEN
Yes, I mean even women who have normal ovaries who are overweight have reduced fertility so there is quite an intimate link between being overweight and even just being moderately overweight can have an adverse effect on getting pregnant naturally and can influence the outcome of pregnancy as well, it's associated with an increased risk of miscarriage and pregnancy complications. That's not to say that there aren't treatments and that Lucy shouldn't seek some advice and may well benefit from some expert fertility treatment.
MYERS
Okay Lucy, I hope that's been helpful. Thinking about women who may not have any periods or are they so irregular they're just not ovulating because of their PCOS is the possibility then of having a baby out of the question or how do you deal with that?
BALEN
No it's not out of the question because there are a number of drugs that can be used to stimulate ovulation, again in the context of a fertility unit that can provide ultrasound monitoring. All these little cysts have eggs and the main risk for women with polycystic ovary syndrome is that when given drugs they can produce too many eggs and run the risk of a multiple pregnancy, so all treatment has to be carefully monitored. The usual treatment that we start off with is a drug called clomiphene or clomid which is a tablet given for five days to stimulate ovulation, if that doesn't work then hormone injections can be given to directly stimulate the production of eggs from the ovaries. But all of these treatments do have to be carefully monitored with frequent ultrasound scans and that may involve going to the clinic for a scan two or three times a week.
MYERS
We'll go to County Durham next where Pauline Hickson is waiting to talk to us about her daughter and I think it's the weight question again isn't it, Pauline what's the particular problem for your daughter?
HICKSON
Well she is overweight ...
MYERS
By how much?
HICKSON
I don't know for sure, she's about five foot four and a half and I think - I would guess that she weighs about twelve and a half stone. I haven't seen her since January last year, she lives at the other side of America, it's a bit difficult to see her. But when she first went to America she was very unhappy and piled weight on and can't lose it, now she eats very sensibly but doesn't lose it. And she does find exercising difficult because her [indistinct word] hair is very coarse and depilatory creams don't really work on it and so she's very embarrassed by that.
MYERS
We're assuming she's got a diagnosis of ...
HICKSON
Yes she was diagnosed several years ago.
MYERS
Well you're not - certainly not the only person to be concerned about weight and you've mentioned additionally this extra hair.
HICKSON
She's actually pregnant at the moment.
MYERS
Well that's good news I guess.
HICKSON
Yes she accidentally got pregnant which is even better news.
MYERS
But you're still - your question is about how she might try and keep her weight in ...
HICKSON
Yes because I'm afraid that now of course that she's not on the pill she might even gain more weight.
MYERS
Okay let's pass the question over to the expert, Adam what would you say?
BALEN
Yes hello. Being overweight is a big problem for men and women, it's an increasing problem in our society and it has all sorts of knock on effects on all sorts of aspects of health and if you have polycystic ovaries and you gain weight the syndrome tends to be worse. I think it's important to say that about 40-50% of women with PCOS are overweight, so if you turn that on its head, about 50% of women with polycystic ovary syndrome have a normal weight. Some people ask does having PCOS make me gain weight and I would say that if you're overweight it makes the PCOS worse rather than having PCOS causing weight gain. There are some people who appear to have a less efficient metabolism and do find it easy to gain weight and it's so much easier to gain weight than to lose it and you have to do 30 minutes of cardiovascular exercise that makes you breathless probably five or six times a week to maintain your weight, let alone to lose weight. So combined with appropriate diet, with not too many calories, regular daily exercise, that's the only way really to keep your weight down. And once you start piling on the weight it's so much harder to lose it. There are of course a number of programmes devised to help with weight reduction, drugs that can help and some people even have gastric surgery to help with weight reduction, which in extreme cases can be very beneficial.
MYERS
I hope that's been helpful, we'll go to Anne whose daughter is with PCOS. Anne, you've got a question about possible drugs to help her with her symptoms, so what are her symptoms Anne?
ANNE
My daughter was diagnosed with PCOS when she was about 25, 26 and then referred to the hospital in Bristol and has been given metformin since. Now her weight, which ballooned when she was 25, did come down but I'm just wondering whether there are some new drugs or other things that could probably help her.
MYERS
Okay, well let's talk first about metformin, this is a drug that again others have mentioned, some have been prescribed metformin, some are taking it, some are not actually enjoying it because it causes them problems, what is the role of metformin in this condition polycystic ovary syndrome Adam?
BALEN
Well metformin is a drug that's been around for many years for the management of late onset diabetes. Late onset diabetes is associated with being overweight and having high levels of insulin and women with polycystic ovary syndrome who are overweight may have a high level of insulin. Insulin is the hormone that our body makes to help us use sugar in our diet. But interestingly insulin also stimulates the ovaries to over-produce testosterone, so it's a double whammy - it increases the level of testosterone and therefore the symptoms of polycystic ovary syndrome. So a few years ago many of us thought that metformin might be the answer - by lowering insulin levels in those who are overweight it may also lower testosterone levels. And there have been some studies that have suggested it may be helpful but over the last couple of years we in Leeds and others have actually, around the world, published some very large studies that have indicated that sadly metformin isn't the hope that we once thought it was. It may help some women but we would usually suggest that metformin should be prescribed specifically for those women who have a defined problem with their blood sugar levels, so they need to have screening tests for diabetes.
MYERS
I'd like to squeeze in one other question Anne, if you don't mind, I'll leave that answer there and I hope that's been helpful. But Dorothy wants to speak to us about the menopause. Dorothy.
DOROTHY
Hello, good afternoon Dr Balen. I'm interested because I've been diagnosed, well 30 years too late you may say, I've had PCOS for that length of time undiagnosed and it was only when my 17 year old daughter was diagnosed in April that I recognised all the symptoms and I mean all the symptoms - I've got many, many symptoms of it. And I went and asked my doctor, along with her, if he could do anything for me and he's now sent me to see an endocrinologist who I'm seeing but I wondered were there any pertinent questions I could ask as my age was just 58?
MYERS
Well hello Dorothy and I'm sorry you've obviously had distressing symptoms for so many years and you also raise a very interesting point about your daughter because we know that polycystic ovary syndrome runs in families, there are genetic causes, about 50% of first degree relatives, so that's sisters or daughters, will have PCOS. As you get older the symptoms tend to improve as far as the menstrual cycle is concerned but some of the longer term metabolic problems, such as an increased risk for diabetes and cardiovascular disease do increase and so those are the questions you should be asking your specialist.
MYERS
Thank you very much. Well I'm afraid that's again all we have time for. Thanks very much to all of you who've phoned and e-mailed today and throughout the series and my particular thanks to Professor Adam Balen for his expertise today. There's more information on our free and confidential helpline, the usual number 0800 044 044. You can of course go to our website that's www.bbc.co.uk follow the prompts to Check Up, you can get more contacts, you can speak to - sorry you can see more information there. You can indeed listen again. This is the last in the current series of Check Up. You can listen though again to all the topics we've covered over the recent weeks and you can download this week's programme as a podcast. We are always of course pleased to hear your comments and your suggestions, so do please e-mail us at checkup@bbc.co.uk. We'll be back with a new series in February, I hope you'll join me then.
ENDS
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