When I photograph people, the women who know that I will edit them later frequently joke, “So, can you give me bigger boobs?” or “Can you make me a size 10?”.

My answer is usually, “Well I can, but I won’t!”.

Yet, I will frequently edit out the odd spot on someone’s face, or even out a blotch. Not to turn someone into this kind of almost CGI nightmarish smoothness, just to save embarrassment.

And frankly, I clone out my own zits on photos, so it would feel wrong to post up photos of others that they’d hate for that reason.

And lately, I’ve been cloning out more of my own spots than ever. I don’t think they’re actually that much worse than usual, but for some reason my self-consciousness has increased about tenfold.

That does happen sometimes, and I’d imagine it will pass again too. But the spots just won’t. Nor will the dark hairs I’ve started sprouting. Because I’ve got Polycystic Ovarian Syndrome.

It’s a disorder which combines cysts on an ovary with a hormone imbalance which can lead to acne (yep), excess hair (yep), irregular periods (yep), male pattern hair loss (not yet), weight gain (yep), infertility (don’t know), and many other possible long-term problems.

Mine was diagnosed almost by accident. I was having surgery for endometriosis and the surgeon noticed that my left ovary was covered in cysts. He did something alarmingly called ‘ovarian drilling’ because the cysts were covering so much of the ovary that eggs had nowhere to be released. Then afterwards blood tests were taken which confirmed that I do indeed have full PCOS.

But because I was being treated for endometriosis, and because that was causing agony and immense bleeding, the PCOS was never really addressed. It was very much secondary. The only real problems I had with it at the time were acne, and an irregular cycle (which was kind of a blessing, because it meant fewer agonising bleeds!).

But now, years and years on, the spots are still constant. They vary in severity, but there’s always at least one or two about. Usually many more. And the black hairs have started sprouting underneath my chin. And I feel horrible.

I turn 33 this week, and I still feel like I’ve got teenage skin. And I’m not only sick of it, but I’m sick of being embarrassed. Which is why I’m talking about it here. It is thought that between 1 in 10 and 1 in 20 women have PCOS, so it’s not just me.

I like breaking society’s beauty rules for women – I don’t usually wear make-up, I wear horizontal stripes while fat, I don’t diet, I don’t straighten my hair. So why do I feel so awful about these ‘rule breakers’?

Lots of women are apparently told to lose weight to help control PCOS symptoms, without any recognition that PCOS causes weight gain, and makes weight loss more difficult. Frankly, with the medications I take for other things, weight loss is virtually impossible. And anyway, dieting is usually a really, really bad idea.

I can’t take hormone treatments, I don’t know if doctors will help me with the symptoms in other ways. But what I can do is speak out and tell the other women out there with PCOS that it’s not just you. I hate it, but I hate it less since talking with another PCOSer last night online.

It’s not just you.

Comments From You

Catarina // Posted 10 May 2010 at 1:26 pm

I too have PCOS I have known for many years and am now 41

The perma acne is a pain but the fertility problems where a shock. I had not considered having children until sometime in my mid 30’s I had a couple of early miscarriages which at the time felt like a relief, due to the irregular periods I had not even realised I was pregnant.

When out of the blue I decided to conceive things started to get difficult, there isn’t much support for PCOS related infertility

I did have a successful pregnancy and a few heartbreaking losses too

I did not go the hormonal treatment route and tried to balance things with food and exercise. and PCOS really affect the mood, depression is your life companion, have learnt to make friends with it

Shahida // Posted 10 May 2010 at 2:03 pm

I felt sad Reading this on my iPhone from my hospital sick bed. Sad, as I too have suffered for many years with PCOS, I first noticed some of the not so very nice symtoms when I was 21. A male colleague thought he was being rather funny, when he asked me if I wanted to borrow his razor. This didn’t do antything for my confidence or self esteem, leading to 20 years of various treatments, electorlysis, waxing, shaving, threading, creams, micro dermabrasion, glycolic peels, to name a few. This isn’t to mention years of misery trying for a baby – very depressing indeed. On the up side, I have a wonderful birth daughter, who is aged 8. And since been diagnosed with diabetes last year, I was prescribed Metformin, which appears to have worked wonders, I know have regular monthly cycles, believe me when there have been times when I’ve not had a period for 9 months or longer it does feel like a blessing. The spots have completely disappeared, and so too has the hair growth, albeit a wee stray one that pops up occasionally. That I think is a sign of ageing rather than the PCOS rearing it’s ugly head again.

LR // Posted 10 May 2010 at 2:39 pm

I think I might have PCOS. In the last year or so I’ve started to sprout dark hair in unusual places (I’m naturally blonde), and have had way more spot outbreaks than I did as a teenager. I also have ongoing weight and mood problems. The issue is that I’m between GPs. I recently moved to a new place, so I’m out of the jurisdiction of my old GP, and the only NHS surgery accepting new patients in the new area is a really scabby place I don’t feel comfortable going to. Not really sure what to do. If I have got PCOS I really need to get it sorted as the hair issue is very embarrasing and my weight has always been a big (excuse the pun) issue.

Nadia // Posted 10 May 2010 at 3:08 pm

I am another PCOS sufferer and I think that is the right word for what is endured. I have to say that the hair loss was very alarming and upsetting, more so because I was embarassed to tell anyone. That has now pretty much stopped as has my acne (which was horrendous) and most of my facial hair growth as I am now taking the contraceptive pill Dianette to combat these problems.

I was first diagnosed when I was 19 (I am 22 now) after years of speculation I wanted to be sure. The doctor only gave me the results casually and there was no mention of symptoms and combatting problems, I was only told to lose weight! Bloody ridiculous given the situation of just being told you have a medical condition.

I have had laser treatment for the facial hair which was painful and embarassing not to mention costly. I think there is talk of it being available on the NHS which I fully support.

Most of the things I have learnt about PCOS have been from the internet and other people writing about the condition, not from my doctor which I think is pretty poor. I think that they don’t take it seriously and only wait for you to mention any problems which most people won’t do as it is humiliating to list them off. The support just isn’t there.

Carmen // Posted 10 May 2010 at 3:21 pm

Philippa, I’m sorry to hear of your struggle. I was diagnosed with PCOS when I was trying to get pregnant 8 years ago. With the support of a great naturopath who specialized in endocrinology I got pregnant without the use of hormone therapy. I took saw palmetto, progesterone, eliminated most sources of carbohydrates from my diet and exercised my head off. It was really hard.

Years later, after some bad dietary choices last holiday season, my symptoms came back and I’m still struggling to get them back under control. I’m sick to death of the acne, receding eyebrows and difficulty losing weight. In addition to saw palmetto, I’m taking progesterone and metformin.

I guess the positive I can offer is that you’re not alone and there are a lot of us out there who are really done with feeling like teenagers (I’m 34).

Angela // Posted 10 May 2010 at 4:49 pm

Great piece Phillipa :D

Like yourself I don’t wear make up or straighten my hair.

My hair actually started going white when I was 20 & it didn’t bother me.

Never wear skirts or heels. You’ll usually find me in biker boots.

Yet the dark coarse hair I find on my chin, upper lip & neck really rocks my confidence.

Even though I’ve never been feminine in my ways, it doesn’t mean I don’t want to feel like a woman inside.

And the hair thinning on my head & hair on my face robs me of that and make me feel freakish at times.

It’s just comforting to know I’m not the only one that feels that way & I’m not the only one that has these problems.

I think you’re right, we need to speak up more so that people like us start believing we’re not less than & it’s simply superficial. All the good stuff, all the attractive qualities are there, we just can’t see them because we’re so focused on only a few pieces of the puzzle.

Charli // Posted 10 May 2010 at 5:59 pm

PCOS seems to be one of the last taboos. I was diagnosed aged 20 (I am now 32) and like many here have stated, the doctor gave me no information whatsoever, just said ‘you need to go on this’ and prescribed me Dianette contraceptive pill. After years of crazy mood swings and depression I came off the pill after splitting with a long term partner and within weeks I felt a million times better. Dianette may work for some but it didnt for me. I get ourbreaks of spots round my chin during my period and have definitely alwasy been aware of being overly hairy but had always been slim verging on skinny. Since coming off of Dianette, I have put on almost a stone and despite constant excercise, its proving impossible to get the weight off, I have decided I would rather be bigger than go back on the pill but wish it wasnt an either/or situation. I agree doctors should provide much more information advice and support for sufferers of PCOS rather than leaving us blindly googling it.

Lindsay Williams // Posted 10 May 2010 at 6:10 pm

You’re not alone. I’m 26 and have terrible acne, as well as that wonderful facial hair. I don’t wear make up, but feel pressured to because of the way my skin looks. I always worry that somehow people will think less of me because of my skin. I was even asked once if I was a heroine addict!

My PCOS is being brushed under the carpet because of my endometriosis, but it’s making my life a misery. I’ve been trying for children for a year, and goodness only knows if it’s the PCOS, the endometriosis or something else entirely that’s causing problems. I’m fed up of being unable to lose weight, having a face as cratered as the moon, and living with the pain of my endometriosis because doctors don’t think I need painkillers stronger than paracetamol.

I was on the pill for almost 15 years to control my heavy and painful periods, and wonder if there is some kind of connection between being on this high hormone medication for so long and my current situation.

Feminist Avatar // Posted 10 May 2010 at 8:10 pm

Both my mother and sister have PCOS and I think I probably have too, but my symptoms aren’t too severe at the moment (yes bad skins and dark, course hair, not too bad on everything else). When I asked my doctor about getting checked, she said don’t worry about it until it causes problems (which I didn’t think was that helpful given that knowing now might enable me to plan for the future- such as having kids).

My sister, who is younger, has quite severe symptoms, and I sometimes wonder whether the reason I managed to delay it was that I was on depo provera for years and the progesterone is meant to reduce the symptoms.

Philippa Willitts // Posted 10 May 2010 at 8:37 pm

Hi Feminist Avatar,

I know that a lot of women only develop symptoms when they come off the pill to try and get pregnant, so the hormone imbalances show themselves then, so it makes sense that taking Depo Provera could perhaps do the same thing.

Hi everyone,

Thanks for all the comments, I’m glad and sad to know that others have similar experiences to me. I was worried about how I’d feel after posting, but now I’m glad I did :)

Ellie // Posted 11 May 2010 at 7:29 am

Philippa and everyone else, thank you so much for talking about this. I have the same Dx and many of the same symptoms. The hair, infertility, depression and weight problems are awful. Acne too. As @Angela says, one can be feminine and very physically attractive without wearing cosmetics, pastel colors, high-heeled shoes etc. I really like to wear skirts because they are comfortable for me, but otherwise am NOT a coiffed, Covergirl type at all. Yet is profoundly hard to feel good about myself when I have awful acne (at age 40), weight issues, and worst of all, the coarse hair. Plenty of thick hair curly hair on my head, but too much on my lower back, and chin too. Awful.

In closing I’ll offer this small positive comment: as I’ve aged, my cycles gradually got on a 28-day sched without need for oral contracptvs. The hirsutism calmed down too! Such a joy to look in the mirror each day and see less hair above my lip (and abdomen), vanishing of it’s own accord, no electolysis or wax needed!

Phillipa,it was very brave and kind of you to write this article. Again, I thank you. (Please use your editorial best judgement with my comment, as I hope I wasn’t too detailed.)

Helen S // Posted 11 May 2010 at 9:31 am

Great post Philippa! Feminist Avatar – your situation sounds very similar to mine.

My sister who is 21 was diagnosed with PCOS last year after years of painful periods, among other things. For her, she feels like it’s been a relief as she finally has an explanation for her symptoms.

I’ve always had irregular periods, coarse dark hair in places (I’m a redhead), and spotty skin which is getting worse the older I get. We’ve just started trying to concieve our first child, so being proactive I went to the Doctors a few months back, telling them about my sister and my fears that I may have it too. My Doctor (who was a woman) just shrugged, refused to do any testing and told me to come back if I havn’t concieved in a year. She wasn’t helpful and wasn’t interested, which is so disheartening. But I’ve been trying to get some help off various doctors for years regarding my very irregular periods with no success – one hinted that I may have ‘fertility problems’ but that was the best I got. It feels like PCOS is a condition swept under the carpet.

Kate // Posted 11 May 2010 at 10:34 am

Thanks for posting this, Philippa! It was very interesting to read.

Feminist Avatar // Posted 11 May 2010 at 11:14 pm

@ Helen S- well, I just thought it is hard enough when you have a career trying to figure out if/when to have kids without the complexities of possible infertility or perhaps more annoyingly, to find out it is now too late and if you had only done something earlier. So, it becomes extremely frustrating when the doctor’s attitude is effectively ‘wait til it’s too late and then we’ll tell you’.

I guess if we want children to be a choice- in the feminist sense- sometimes we need the healthcare professionals to get on board and help us out!

bell bajao-fight domestic // Posted 13 May 2010 at 7:48 am

I agree with you, when you accept your self as you are you are confident and can leave a happy and satisfied life. There is nothing good about cribbing and stressing yourself. We have one life to live so live it fully with contenment.

taylor // Posted 10 June 2010 at 7:40 am

I was diagnosed with PCOS when i was 18 after years of no one understanding why i was not starting my period. I found out that I can’t have a period unless it’s medically induced by the BC pills. In the last 4 years i have gained almost 80 lbs. I haven’t had problems with hair loss or acne but i have dark hair on my face and AWFUL stretch marks that COVER my body and i can not lose weight to save my life. Every doctor tells me lose weight but no one tells you how!!

I power walk at least 2-3 miles a day and i don’t eat fast food and i don’t have a sweet tooth.

It’s so frustrating. Everyone always puts the blame on me, and no one ever takes the time to see beyond my weight. I hate having this problem.

I’m also really worried about infertility. I’m in a relationship and would love to be a mother more than anything one day and even at 21 i’m constantly worried that i’m running out of time. It’s sad to see that i’m not the only one as much as it comforts me, i wouldn’t wish this on anyone else. It’s not fair and lately i have had a really hard time dealing with all of it.

I am on metformin and have been for over a year and i have not lost ANY weight and still have side effects. I live in constant nausea but I feel like if I give up on it my testosterone levels will sky rocket again and children will be out of the question for sure. It stresses me out and I am constantly worried about what the future is going to hold. i want to be healthy and normal is there any diet or anything that has worked for anyone else?

I have tried :

slimfast

atkins

nutrisystem

weight watchers

vegetarian

someone help please?

Frankie // Posted 5 July 2010 at 5:11 pm

Hey,

i’m also a sufferer of PCOS and i know the stress of this condition. However i must stress excessive use of carbs (refined) and sugar is not our friend. I follow the insulin resistance diet lifestyle, and it’s easy to follow and you are not left feeling deprived as it is much livable. I was on the south beach diet and that worked but since my underlying problem is being insulin resistant i decided to try this out. So far so good! With me my symptoms are due to weight and i’m going to fight this with all i can.

I’ve started charting for ovulation with test strips (which have confirmed i’m ovulating) I suggest to you all ‘Taking charge of your fertility’ by Toni Welcher. As a 19 year old i feel more in tune with my body than most and when i went to my last doctors visit she was impressed that i new so much, that she was unable to fool me around or push my matters under the carpet.

Strength training + cardio helps with this syndrome so at least 3-5 times a week can push your body in the right direction. I also suggest a good multi vitamin+ omega’s(if you don’t eat enough oily fish).

Frankie

Teneshya Miller // Posted 20 July 2010 at 8:07 pm

I can relate to every single comment posted about PCOS and its dreaded symptoms. Living with PCOS is not only hard but it can be both embarrassing and humiliating. Though there is no cure, the solution to our problem does not involve giving up or throwing in the towel. Because of insulin resistance losing weight can be very difficult but it is not impossible. In some instances losing a mere 15 pounds can drastically reduce symptoms in some women. This is not a about some fad diet or starving yourself. Please read books that talk about lifestyle changes. Anything that promotes fad dieting or unhealthy unbalanced diets should be avoided. Try reading the Glucose Revolution, or The Schwarzbein Principle, and also The Patients Guide to PCOS. These are excellent resources that offer practical solutions and hope. You can lose weight with PCOS, you can have children with PCOS, and believe it or not your cycle can become more regular even with PCOS. But my sisters, you have to be willing to do something, Giving up, being idle, and quitting are not options. Hang in there!

Chloe // Posted 27 July 2010 at 2:10 am

@taylor, I absolutely empathize with you, it’s so frustrating to hear “oh you just need to eat right and exercise and you’ll lose weight and everything else will fall into place.” It seems like all of the information I find about hormonal disorders that cause weight gain say that the best treatment is to lose weight. Well DUH.

I gained over 60 pounds in the blink of an eye, and then spent years carefully dieting and exercising 12+ hours per week, and I could not even lose five pounds. Since my thyroid levels were normal, the doctors said I must be consuming more calories than I realized and simply needed to buckle down on the diet. Well, eventually I started to believe them, and decided that I needed conclusive proof that losing weight was impossible.

I literally starved myself for five months. With no medical supervision whatsoever, I simply stopped eating. I had a cup of coffee in the morning with a little cream, and a yogurt (and a multivitamin) at night. My calorie intake was less than 250 per day. I became so weak and dizzy that there were times I could barely walk. I often was unable to sleep because I was so hungry. I had chronic headaches and bad breath. I was basically suffering from all of the same dangerous medical problems as anorexics. And yet I did not lose any weight. (To be exact, I lost between 3 and 5 pounds of water weight that I would gain back every time I drank an appropriate amount of water.)

After conducting this horrible experiment, I finally found a doctor who believed me, and I am now under the care of an endocrinologist. I don’t have a diagnosis yet, and although I have some symptoms and elevated androgen levels similar to PCOS, my complete bloodwork appears to rule it out as an explanation. The good news is that my recent testing does not show any permanent damage to my organs as a result of my five months of starvation.

So I continue to search for an answer, but I just wanted to share that I know how frustrating it is to hear “have you tried Weight Watchers/Atkins/Slim-Fast/blahblahblah?” I used to reply “yes, I’ve tried everything,” but now I just bluntly say “I literally starved myself near to death and that didn’t work, so I doubt a fad diet is the answer, thanks.”

Best wishes to all.

frankie // Posted 27 July 2010 at 5:02 pm

@ Teneshya Miller i agree fad diets do not work @ all that’s why i chose IR way of eating to south beach because it made more sense and allowed me to really see what i was putting in my body. What also upsets me is the stories by some ladies who are on their witts end/depressed or in tears because of non-caring and ignorant doctors. That’s why i’m blessed to have a knowledgeable endo who told me that it’s a myth that women with PCOS cannot have children, sometimes it could take the simplest thing as losing weight, a type of exercise, change of lifestyle in regards to food, metformin, a vitamin that it makes me wonder sometimes.

Women who have undergone fertility treatment that failed just to end up taking metformin or a supplement or not even trying to find out their pregnant and having successful pregnancies.

But i would say that particular forms of exercise affect the body in different ways, resulting in a change.

There was a thread on soulcysters where the women included strength training with cardio and their insulin levels improved greatly.

Laura // Posted 4 October 2010 at 9:19 pm

Please say something about endometriosis, I feel like I have spent 5 years battling to be taken seriously by GPs and now consultants. I have been suicidal, but offered antidepressants, when all I ever wanted was to be treated and live my life as fully as I had done until last year- when I couldn’t walk because it was so bad. Have other people found the same difficulty with this particular condition?

Mywish // Posted 24 February 2011 at 7:07 pm

I also have pcos. i have had it since 9 years. ihave tried all diets, all sorts of exercises but have not lost any weight, instead i have gained too much, i also have too much hair growth, depression and infertility. I have been trying for a baby since 16 months but havent been successful. it is very frustrating and depressing when i wait each month and hope to conceive. i have to hide the fact that i have this disease as i do not want people to have pity on me. I want to be a mother but now i dont think i ever will be. sometimes i wonder why me? why do i have it? why do people who do not even want children, conceive easily and when i really want one, i cant have it? It feels better to know that i am not alone. But other people who are normal do not understand me, they just give advises about loosing weight. People also ask me why i am not having children and i just dont have an answer for that. my parents and inlaws all want me to have a baby but i cant. these thing depress me and are making me go crazy..can anyone tell me what to do?

GVN // Posted 7 April 2011 at 11:06 am

Anyone with PCOS may want to speak to their doctor about a possible link with hypothyroidism which can not only cause similar symptoms to PCOS, but prevents you from being able to lose weight. My sister has found this out after 13 years of being told she had PCOS but being unable to lose any weight no matter how hard she tried.

megg.bennett // Posted 6 May 2016 at 6:24 pm

I am 16 and have been diagnosed with PCOS very recently after years of being bullied for having abnormally hairy arms. It got worse as puberty hit and the hair started growing under my chin and I seem to be hairy all over. The worst part is not the bullying but the amount of pain that waxing puts me through on a regular basis and even that is not a long term solution. The hormone pill they put me on has resulted in horrific headaches; therefore they took me off it and there is nothing they can do. When I read this I felt so much better about my condition and the fact that someone else has put my feelings into words it an amazing thing because not many people understand what it is like! So thank you Philippa Willitts!

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