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The PCOSA Record

Unity through Understanding — electronically

Book on PCOS due out this fall - here's your sneak preview!

From the forthcoming book: PCOS: A Woman's Guide to Dealing with Polycystic Ovary Syndrome, By Colette Harris with Dr. Adam Carey

© Colette Harris and Dr. Adam Carey, 2000. All rights reserved. Do not use without written permission.

Published by Thorsons, An imprint of HarperCollinsPublishers UK. Distributed to the trade by National Book Network: 800-46206420 ISBN: 0-7225-3975-4 $16 paperback

EMOTIONAL HELP

The emotional consequences of PCOS are often just as difficult to deal with as the physical ones. Acknowledging the emotional problems that you experience in whatever area of your life can be painful. But simply bringing them to the surface can make them seem less traumatic and easier to cope with.

In the end, your journey of coming to terms with the physical and emotional aspects of having PCOS is designed to stop you feeling like a PCOS sufferer and to get you feeling like a woman who just happens to have PCOS.

BODY IMAGE

You would have to look very hard to find someone who isn't worried about the way they look. And although many more men are beginning to come under pressure from media images and women's expectations of them, most images of naked or semi-clothed bodies displayed in public are still of female bodies.

PCOS can focus your attention even more firmly on your body than it would be even if you didn't have the condition. Putting on weight, dealing with acne, finding darkening or excess body hair, losing hair from your head, worrying about fertility or coping with infertility can all strike at the heart of your sense of womanhood and femininity.

• "I feel betrayed by my body. I have always wanted children and seen my body as the perfectly designed machine to provide them, but it has failed me. I feel like a failure." Katrina, 35
• "I am horrified by the acne I get. I feel as self-conscious as a teenager about going out in public without lots of make-up on. And they come over my back and chest as well, so I can't wear what I want to wear because I have to cover up." Kerri, 26
• "I feel manly. I'm ashamed of my moustache, and having a hairy belly button is just gross." Emily, 21
• "If someone looks at me, I think they are staring because I am so freakish. I used to be a size 10 and now I'm a size 18 and I feel too fat. I feel like I can't eat in public because people will look at me and think I don't deserve to be eating because I am so fat." Henrietta, 34
• "I don't feel like I'm a proper woman because I don't have many periods. I feel like my body isn't a woman's body because it doesn't seem to work properly." Joan, 36
• "I used to love my long hair. But I had to have it all cut off because it was all coming out. I looked in the mirror one day and realized my hair was straggly and thin and looked awful. But I can't help feeling I have lost my crowning glory. I don't feel as attractive any more." Rachel, 25

The depths of these women's disappointment and self-consciousness might seem extreme. But the issues they raise are very real. When your body doesn't do what you expect it to do, doesn't look as you would wish it to look and can be seen to have betrayed you in some way by cheating you out of the simple pleasure of not having to think about it (never mind being happy with it) your self-confidence takes a knock.

Most of us don't like some part of our bodies, from a nose we perceive to be crooked to a bottom we're convinced is half the size of a bus. Other people probably don't think the same thing, and see you far less critically than you see yourself. This is the difference between your body and your body image.

Restoring and maintaining a positive body image when you have PCOS can be hard, especially if you have mood swings, feel depressed or are going through trying for a baby or even starting up a new relationship. It can also be difficult if you have previously been happy with your body and you look back upon a 'golden age' when your life seemed to be just right because you were slimmer or less hairy or whatever it is you have decided was the best thing about your body at that time. This can be especially true if you have had an eating disorder in the past (eating disorders can be a trigger for PCOS, as we have seen). Body image problems can also lead women to develop eating disorders, or an unhealthy relationship with food because they are unhappy about the way they look and go about trying to change this in the wrong way (for self-help for eating disorders see the A-Z of Symptoms chapter; for further information and support groups see the Useful Addresses chapter).

There are two mental steps that are empowering and important for women wanting to help themselves feel less negative about their bodies. Letting go of your rosy image of the perfect past or the perfect future to be, and learning to be happy with how you are now is one of them. Forgiving your body for 'betraying' you is the other.

These are very difficult processes to try and work through. Counseling can help, but carrying out easier, smaller steps towards a more positive outlook can also slowly help you to feel happier about yourself.

SIMPLE STEPS TO BETTER BODY IMAGE

Prune your wardrobe. Give some of your clothes to charity. If they're too small and you're keeping them there for when you lose weight, they're only making you feel guilty. If they're unflattering but you keep them because of sentimental value, take them out of your wardrobe and store them away. If they're comfy but you always feel a bit unsure about your appearance in them, put them aside for weekends around the house, or bite the bullet and get rid of them - you'll always be able to find comfy clothes that make you feel good. Stand tall. Think about your posture. You will feel more confident and look more streamlined if you stand, walk and sit properly. Try reminding yourself to sit properly at your desk on the hour every hour - you'll be surprised how quickly you develop better habits. Or take a course in The Alexander Technique to help realign your posture permanently. Exercise! Getting out for a brisk 20-minute walk (try and make sure you're slightly out of breath as you go) will make you feel instantly fitter. The buzz you get from having spent time on yourself, and achieved something you keep meaning to do, will make you feel good.

Change your image. It could be a new haircut you've been dying to try, a new shade of lipstick, or thinking about mixing and matching your existing wardrobe in new combinations. Taking even half an hour to think about the way you'd really like to look will help you face the world with confidence. Talk about it. Why do you feel so uncomfortable with your body? Can you pin down particular instances that make you feel self-conscious? Do you know you focus all the unhappiness in your life on the way you look, telling yourself life would be perfect if you could only lose weight? Perhaps you could consider counseling to talk out your problems. Get treatment for PCOS. If you're not already getting treatment, go and ask for help from your doctor. Even this step will help you to feel better. If you're having treatment and it's not working or you're not happy with it, don't just carry on without asking questions - your treatment may be something your healthcare practitioner can adjust to suit you better.

SELF-ESTEEM

Body image and self-esteem are intimately linked. The danger lies in allowing your negative attitudes towards your body to color your sense of yourself as a failure in all areas of your life. 'Low self-esteem can build gradually,' says psychotherapist Gael Lindenfield. 'You start to develop habits of not looking after yourself, choosing relationships that are not healthy, and selling out on your values.'

• "I know that when I first started getting acne and my periods were irregular I felt my body wasn't like a normal woman's body and I wouldn't let my boyfriends come near me, which caused the end of several relationships." Susan, 44

Accepting that you have self-esteem problems and tackling them now can help to stop a downward spiral - deciding that you're not good enough before you start something, which means you don't make much effort with it and end up fulfilling your idea that you're not very good at it.

Although it's been said a hundred times before, accentuating the positive aspects of your life and relationships is one of the best ways to maintain self-esteem while you work through the issues surrounding your body image. The better your levels of self-esteem in general, the better your body image will be. A strong sense of self-worth can make life feel good and full of possibilities. It's well worth putting in some effort to give you a lift.

Here are a few ideas to get you started.

• Acknowledge your strengths. Write out a list of all the things you know you're good at, from dealing with people on the phone at work, to making a great vegetable lasagna, or even picking up bargains. You'll be surprised at the lift it will give you to spend a few thoughts on your positive traits.
• Make a list. Spend a week noting down every time you feel full of self-confidence and why, and the times when you feel low on self- confidence. It could be anything from making an effort to go on a date with your partner to spend some quality time together, to agreeing to do someone a favor when you haven't got time. At the end of the week, take a look at your balance sheet and think about what you can do to boost the good times and turn the bad times around.
• Mirror work. 'Look in the mirror and say "I love you, I really, really love you," every day at least once,' says Louise Hay. 'It might seem very weird at first but it's all about accepting yourself as naturally lovable and giving yourself love now, rather than waiting until you lose the weight, get a new job, tell your partner what's been bugging you.'
• Homeopathic remedies can help you to level out the downward spiral and decide to take positive steps. If a crisis leaves you weepy one minute and cheerful the next, try the homeopathic remedy Ignatia. For someone who looks to be coping well on the surface, but underneath is full of anger and resentment, try Staphysagria. If you find yourself taking things too seriously, with anxiety, insomnia, and irritability towards others, try Arsenicum album. These remedies are available in pharmacies and healthfood stores. Take them twice a day, dissolving them on your tongue. Don't take for more than 2-3 days without consulting a practitioner.
• The Bach Flower Remedies aim to treat a whole spectrum of emotional states. Larch is good if you are lacking in self-confidence and always believe you'll fail so don't even try. If you're convinced that you're not as attractive as other people, try Crab apple. If you tend to take the blame for things even when they're not your fault, try Pine.
• Do something. If you've been promising yourself you'll start a new class at nightschool, exercise more, eat more healthily, even get a new haircut, stop putting it off and get on with it. Even if you've been meaning to clean out the fridge, or call a friend you haven't spoken to in a while, or even take the bottles taking over your kitchen to the bottle bank, get rid of the guilt by getting started. Getting through that mental block will give you a rush of good feeling and help you to start making bigger changes in your life.
• Step lightly. Bring fun and humor back into your life and you are guaranteed to feel better. Children laugh all the time, but as we grow into adults we grow out of the habit. It's all too easy to feel downtrodden and get stuck in a rut of complaining and focusing on the serious and downsides of life. Plan in some play time, whether it's walking the dog, watching a comedy video, phoning a friend who always makes you laugh, even sharing your in-jokes from work with your partner at home, or reading a favorite book.
• Congratulate yourself when you do something well. If your friend, partner or child did something they were proud of you'd congratulate them. So be kind to yourself once in a while. Tell someone you feel good about what you've achieved. Or reward yourself with something simple such as a bunch of flowers, a walk in the park or cooking your favorite meal.
• Learn a new language. If you think and talk about yourself in words and phrases that carry a negative message, you will sooner or later end up believing them. A powerful esteem-booster is to make a conscious effort - whenever you think of it - to clean up your language and fill it with positive, liberating messages about yourself. For instance, avoid phrases like 'I can't' or 'I'm hopeless'. Replace with something like, 'I'll do my best', or 'I'm getting better at ...' Turn 'problems' into 'challenges' and 'nervousness' into 'excitement'. Avoid 'oughts' and 'shoulds', and phrases about 'fault' and 'blame'. When something goes wrong, remember it is just one event - don't use it as a chance for a long-term self-term condemnation such as 'I always get that wrong.'

PARTNERSHIPS

Feeling unattractive and having low self-esteem, as well as PCOS symptoms including emotional turmoil such as mood swings and depression, can all affect your relationships. Many women with PCOS talk about feelings of guilt when they put on weight or because their bodies have changed, and they feel they are not the person their partner was first attracted to, or are afraid that their partner finds them less desirable than before.

Some women have talked about the huge burden of feeling they have let their partner down if they have difficulty conceiving or end up not having children.

• "Sometimes I feel like I should tell my husband that it's OK for him to leave, that I understand that he wants children and it doesn't look like I'll be able to make his dream come true. I don't want him to leave, of course I don't, but sometimes I feel I don't have the right to expect him to stay." Debbie, 33

Another common area of difficulty is the sense that being in a partnership should mean no secrets, and yet not wanting to tell your partner that you have to shave or wax or bleach your top lip every day; or that you take antibiotics for your acne.

• "In the same way that a lot of my friends would always lock the door if they were on the toilet, I always lock the door when I'm bleaching. I know he probably knows but it helps me to feel more feminine." Angela, 35

On the other hand, some women feel that sharing their whole PCOS journey with their partner is the best thing they could have done.

• "I think it's really sad if people feel they can't share their intimate lives with their partners. I am still Annabel inside whether I'm upset about putting on weight or I have to shave my stomach. Dealing with what life throws at you as a couple can help you to get through it all feeling much better about yourself." Annabel, 29

No one can really tell you what to do to get the best out of your relationship when you have PCOS. But thinking about the underlying causes of problems and insecurities can help you to isolate a problem such as a bad body image or a lack of energy, and try to focus on improving one thing at a time. And talking about your relationship and your emotional life together can help you to work out how your partner feels about your PCOS and how it affects you, your partner, and your time together. You might have convinced yourself that your partner feels cheated, or has stopped fancying you because you've put on weight, only to discover that they feel you are pushing them away and they don't know what to do about it.

• "When Natalie found out she had PCOS she was pleased to know all the mood swings and weight had a name and it wasn't her fault, but she retreated into herself. It was like there was this thing she had to fight on her own, and I felt lost because I didn't really understand about women's health very much, but whenever I asked her she didn't want to talk about it." Ian, 28

It can be tempting to put a heart-to-heart on hold because you're afraid that your partner will start saying things you don't want to hear, or you'll start realizing that PCOS has nothing to do with your problems as a couple but that you're just the wrong couple and then you'll be left to deal with it on your own. But being brave and initiating discussions about your life together, or even wordlessly trying to get back into a rhythm of intimacy with your partner, can help you to discover whether you are really happy, whether you have the right support in your relationship, and whether or not PCOS has to affect your time together.

YOUR LONG-TERM SEX LIFE
Boosting Sexual Confidence

If you have a satisfying sex life as a single person, or your partnership is going as well as you expect or want it to, then stop reading this and go out and enjoy yourself.

But if you feel you want to find someone new, or your relationship has dwindled a bit, or you're not as close as you once were and you feel stuck in a rut, read on for a few ideas about helping you get back on track.

First of all you have to look at PCOS in the context of our busy modern lifestyles. It can be easy to hide behind your tiredness, symptoms and fluctuating self-esteem and use them as the reason for the sex in the relationship fizzling out, or for hiding at home and not meeting anyone new, without actually trying to work out what's going on at a deeper level. Your sex life could be affected simply by your busy life, taking care of the kids, stress at work and a hundred other things aside from PCOS.

If you feel that tackling basic day-to-day problems like never going out because you haven't got a reliable babysitter, spending lots of time sitting in front of the TV together rather than talking, worrying about money problems, or being miserable because you're in a job you hate, then sorting out these problems first could lend you or your existing relationship a new lease of life.

Back to Basics

If you are in a partnership and your life together is great apart from when you are actually together, then you probably need to do a bit more digging. Although there is a huge amount of pressure on all of us to feel that if we're not 'beautiful' our partners will be turned off by us, underneath we all know there is whole lot more to a relationship. There are core rules to attraction which involve personality, engaging conversation, fun and shared passions - and you can engage in these things whether you feel you look great or not. It is a chicken-and-egg situation - some of you may feel you really don't want to get into this sort of stuff until you feel good about your appearance. But on the other hand, getting back in touch with all these shared intimacies and injecting some variety back into your relationship can actually have the effect of helping you feel more attractive.

Here are a few ideas to get you started on building intimacy back into your relationship:

• Talk to each other. It's all too easy to talk about the practicalities of everyday life without touching on how you and your partner are feeling about life, work, and each other. Try making a pact for a week that as soon as you see each other at the end of a busy day, no matter how late it is, you will spend 10 minutes together to talk about the kind of day each of you had, and then another 10 minutes expressing how the day affected you emotionally. This way you can give each other support and build up intimacy, which can otherwise get lost.
• Get in touch. When you have PCOS it can be difficult to engage in a sexual relationship because you're tired, you feel moody, anxious or you don't feel comfortable with your body. But a fear of intimacy can often stop you even holding hands with your partner and can shut them out. Make a conscious effort to show physical affection, and to receive it. You will be surprised at how supported and accepted this can make you feel.
• Enrich your partnership. Spend some 'quality time' together, whether it's a daily chat over a cup of tea, a picnic one weekend afternoon, a walk in the park or being mischievous and spending a 'sick day' off work together.
• Have fun. Sex can become a battleground for so many conflicting emotions that it's easy to forget that it - and your relationship - are meant to be fun. Rekindle a level of fun in your day-to-day life - share jokes from the office, or talk about what the kids said to make you laugh, and try things together that you haven't done before, whether that's bowling, reading to each other from your favorite books, sharing the story behind a favorite photograph or even going to the cinema instead of renting a video.

Let's Talk About Sex

If you feel your intimacy levels with your partner are well established but your sex life has dwindled, try and work out the dynamics in the relationship. Do either of you want the sex back? Does one of you seem to want it more than the other?

Now is the time to try and talk to your partner about what is happening in your physical relationship. It's easier to say than it is to do, because if there's one thing that we get embarrassed about talking about it's sex, especially if it hasn't been happening for a long time. So how do you start a conversation about sex?

• Ask for support. Whether in the bedroom or outside you can always ask for help in raising an issue. It helps to make the issue a shared one. For example, 'There's something I feel we need to talk about, but I'm not sure how to deal with it. Can you help?'
• Be forthright. If it's easier for you to come straight to the point, that's the way to do it. For example, you could try, 'I feel like we haven't been having sex a lot lately and I'd really like us to. How do you feel about it?'
• Write it down. If face-to-face talking is too nerve-wracking, try writing out your feelings and desires, because then you can say what you really feel without getting sidetracked into an argument.
• Admit you're embarrassed. For example, 'I've always found it difficult talking about sex. But our relationship means a great deal to me. I'd like us to start talking. What do you think?'

Where to Next?

Once you've started your discussion there can sometimes be a sense of pressure to start having mad passionate sex all of a sudden. This can be a fragile time, when you could both be feeling like you have to 'perform' because you've laid your sex life on the line.

With the expectation in the air it can sometimes be useful to stir up a bit of romance, whether that's going for a candlelit meal together, a walk in the rain, suggesting a bath together, or offering to massage your partner. Although it might sound corny, actually making the effort to set aside some special time together, or even just to light a few candles in the bedroom, can really help to make you feel close to your partner and start seeing them as a lover again, the one person you can share your body with.

If you feel self-conscious about things like your weight, acne or body hair, perhaps setting aside a 'date' night in advance will give you time to prepare yourself, whether that means buying a new nightie which makes you feel sexy without revealing too much, borrowing a friend's new perfume or having your tummy waxed.

It can also be helpful (and pleasurable!) to rekindle your sense of desire with masturbation. It can be easy to get into a frame of mind where you don't see yourself as a sexual being when you're not having a particularly sexy time in your relationship. But relearning the delights of your body for yourself can sometimes help you rediscover your passionate side.

Trying for a Baby

Trying for a baby can put an enormous strain on any couple, both emotionally and sexually. It changes the nature of sex from simply a source of pleasure and connection between the two of you to a physiological process with a goal in mind. This in turn brings up the concepts of success and failure, which is enough to make anyone feel nervous about sex. This tension can be increased for couples with PCOS if they are having trouble getting pregnant.

• "I am so desperate for a baby that I can't have sex with my husband just to enjoy it. That means you don't feel like it very much even though it's the one thing you're supposed to be doing as much as possible to try and get pregnant. My husband feels under pressure and that doesn't help - he once said feels like he's just a sperm bank, not the man I chose to spend the rest of my life with." Jeanette, 28

• "We were so anxious and tearful and up one minute and down the next, as well as being worried by the money side of things, that after two cycles we decided to have a break to discuss whether it was worth all the heartache. Just being able to do that actually brought us closer as a couple, because we realized that however much we wanted a baby we also still wanted each other. We had a year of just being together again before we started another cycle of treatment, and it kept us going." Carla, 37

• "Once I had chatted to other people about it and talked to my husband about how loads of other couples were having 'impregnation' sex, we began to actually be able to have the odd joke about it, which was a huge breakthrough. Laughing about it broke the tension and made us feel like a couple again, and helped us to have better, less mechanical sex." Frieda, 34

More Help and Support for Couples

If you and your partner find it too difficult to tackle discussing the changing nature of your relationship, or how PCOS has affected it, you can go and get some support by seeing a relationship counselor. Having a third, sympathetic person in the room can help you to start talking about things more openly, because you suddenly feel it is 'allowed'. You can also be referred to a sex therapist in particular, if that's the area of your relationship you feel you want or need to focus on.

If this seems too daunting or public, there are many useful books out there for couples wanting to sort through their problems. You could schedule an hour a week to sit and work through your problems together in the same way as you would commit to going to see a counselor, without feeling you have to open your heart with someone else present.

The Dating Game

If you enjoy being single or you feel you just happen to be single because that's where you are in your life at the moment, then it's not an issue for you. But being a single woman with PCOS can also be hard, especially if PCOS contributed to the breakdown of a previous relationship or if it is the thing that stops you getting intimate with anyone. As well as the questions of body image and self-esteem, there are questions about how much to tell someone how soon into meeting them.

• "Whenever I meet someone new I don't bother telling them anything. If they like me they like me, if they don't they don't. Unless we're going to get serious I'm not going to start going on about it. It's as much for me as for him - I just want to have a good time." Rachel, 24
• "I've reached a stage in my life where I'm pretty sure that every woman's body has the odd weird thing about it and so I don't care about my hairy tummy any more. If someone's really into me they won't care." Gillian, 39

On the other hand some women feel they want to share their PCOS experience with new possible mates they meet because they feel it helps to define who they are.

• "I feel PCOS is the reason why I'm single now because my previous partner couldn't cope with it all. So I don't want to run the risk of getting close to someone, letting them in on my PCOS only to find that they can't cope either. The sort of person I want to be with won't be fazed by knowing." Kelly, 31

Sadly, however, some women feel that PCOS actually stops them meeting not only new potential partners, but even new friends.

• "I don't enjoy being a single woman with no friends. But I just can't face the world knowing I have a stubbly chin and bad acne, and I'm not feeling particularly good about life. I feel like I'll bring people down and they won't want to go out with me again." Alicia, 33

No one can tell you how to live your life to enjoy it the most except you. And the only way you can decide what's best is to be honest with yourself.

• "I realized I was getting really depressed about being single because my best friend got married. But I kind of blamed that on my PCOS, when really I feel great and I just get acne and have trouble with no periods, but in general my life isn't that different to most women I know who worry about their weight and get bad period pain and feel like they want to get married and settled down." Annie, 29
• "I used to get really down about PCOS because I felt tired a lot and I didn't get regular periods so I never felt quite right in myself. But I decided it wasn't going to beat me and I refuse to let it rule my life. If people or new men ask me what's wrong, say if I cancel a date because I'm tired, then I'll tell them. But I'm me, not PCOS." Kia, 28

STRESS-BUSTING

Coping with long-term ill health, or worries about getting ill again if you're going through a good patch, can leave you feeling stressed. If you're tired at work one day, everything seems harder; if you've got a bout of low self-esteem, the world can seem black; if you've got yet another consultation with your gynecologist, you can end up feeling like PCOS is a never-ending problem; if your doctor won't listen your self-confidence can be shaken. There is also a lot of anger bubbling away inside women with PCOS who feel they have been treated badly by the medical profession and that life has cheated them in some way.

All the issues we have mentioned in the book, and even just the hard work of having to eat well, exercise and deal with the emotional consequences of PCOS can leave you feeling stressed, anxious, tense and tearful.

As mentioned in Chapter 10, having a good cry can help you to let go of pent-up feelings, as can talking to other women with PCOS or your partner or a good friend.

• "If I get a bad day when I feel PCOS is such a struggle I call up my friend Daisy who also has PCOS because there's nothing like talking to someone who knows just how you feel." Lana, 29
• "My boyfriend Jim is brilliant when I get low about PCOS. At first he used to say, 'well this will make you feel better' or 'that will help' when all I wanted him to say was, 'well, gee you must feel bad sometimes,' and just let me talk. So we had a few fights about it because he said he just wanted to help, but now we have good communication and I feel better when we talk." Chantelle, 23

Talking out your bad days is great - but learning to manage feelings of stress and tension so you don't get as many bad days is even better. It's important to start practicing effective stress-busting strategies to help let go of all this emotional and physical tension, not least because high stress levels aren't good for your health.

Aside from eating well, sleeping well and being kind to yourself, here are a few practical suggestions for helping to manage stress.

• Relaxing therapies. Aromatherapy, massage and meditation are all great ways to de-stress, as is reflexology. Use the Useful Addresses chapter to get in touch with your local therapist. If it's too expensive to have a monthly treatment call the training colleges near you to see if they run discount treatment packages. Or get a good book and teach yourself.
• Do-it-yourself aromatherapy. Classic essential oils to combat stress include geranium, lavender, neroli, and Roman chamomile. Add 3 to 4 drops to a warm (not hot) bath, or put a couple of drops on to a burner, diffuser or light bulb vaporizer to release the calming scents.
• Zone out. As mentioned in Chapter 10, daydreaming is a natural stress-busting break. Allow your mind to wander for 5 minutes if you feel truly tense. Maybe use a favorite picture or holiday memory to help you drift off.
• Opt out. Find places you know make you feel relaxed and spend some time there as often as you can, even if it's only 10 minutes in the park at lunchtime.
• Treat yourself. Turn off the answer machine or take the phone off the hook for half an hour and just listen to your favorite music, have a snooze, watch a video or some TV, or read a book. You'll be amazed at how peaceful you can feel when you give yourself the chance to be alone.

SUPPORT NETWORKS

You can help yourself to get through bad days and celebrate good days by gathering together your own support network. This can come ready-made in the form of a self-help group or an email chat room, or it can be the web of people you talk to about your PCOS, whether penpals, your family or your buddies at work.

Even if you feel you can cope on your own, the sense of comfort you can get from knowing you have someone there to help you if you need it is very supportive.

The people in your support network need to know how you are and what PCOS is as well as how you feel about it, so that in a time of high emotion, when you're perhaps not talking clearly, they know what you mean and won't say something that makes you feel worse just because they don't know enough. So creating a useful network is as much down to you putting in some hard work, and maybe having to bring up some personal or embarrassing topics in the beginning, as it is down to the people you enlist to help you out or just listen from time to time.

• "When I first got ill and was just too tired and depressed to go out with my friends or spend time doing fun stuff, I almost couldn't be bothered to explain to people what was going on. But one of my friends got really mad at me and said she hated seeing me looking so ill and upset, but there was nothing she could do to reach out to me unless I told her what was wrong. So we sat down and I explained what I could and it was the best thing I could have done. I did get a bit tired of telling my story to people, partly because I felt like I was boring them as I'd heard the story so many times. But now I don't even have to mention PCOS, I can just say I'm too tired and my friends won't be upset with me. I also get stuff from magazines and newspapers from them, or friends will tell me about something they've found on the Internet. I really feel cherished by their support." Maria, 25

The moral of this story is don't underestimate how much the people around you are happy to be there for you, or how much you may need them to be.

Comments? Concerns? Corrections? Suggestions?? Please contact Kate A. Pohjola for more information/questions/suggestions/corrections.

The PCOS Record is published as a service to the members of the online PCOS community by the PolyCystic Ovarian Support Association, Inc.