When Things Get Hairy August 7, 2010

On my last post, I asked you, dear Cyster readers, what topics you would like to talk more about, particularly outside of the realm of fertility/parenthood and weight loss.  The response was mainly around self esteem, depression, sexuality, femininity and of course that old chestnut for women with PCOS, hirsuitism.

So let’s talk about that one first shall we?  It’s one I’m qualified to post about, because I deal with it, and have put a whole lot of years time, energy and thought into it.  Boy, have I done that!

Now before we go any further, I’m going to try to avoid the use of the term hirsuitism.  I know it’s the medical term for “excess hair”, but to me it implies that there is some line that is ruled in the sand that says “This much hair is ok, but any more than that is excess, and excess = bad.”  Hair is hair.  Some people have lots of it.  Some people have a little bit of it.  Some people have none.  What the definition of “too much” is for hairiness is completely and utterly up to you as an individual, and not some medical definition or whatever the beauty industry tells you should be considered too much.  You can be completely covered in hair, and not feel that it is “excess”.  Or you can only have a wee bit and feel that it’s too much.  So let’s not use hirsuitism huh?

Another thing I want to establish is that hair is not dirty or shameful, and having more hair is not “letting yourself go”.  It’s just hair.  Keratin that grows out of follicles, no more shameful or dirty for growing out of your armpits or pubic area or face or legs or arms or anywhere else on your body than it is for growing out of your head.  It’s hair.  It’s not like you’ve smeared poo all over your face and body.  It’s HAIR.

Advertising and media tell us that there is a line as to how much hair is normal.  Which I’ve seen shrink to less and less in my lifetime – these days women are expected to be completely hairless except for their heads, which can only have fine eyebrows and yet must have long, thick eyelashes.  One of the reasons I love retro nude photography is because women didn’t remove every trace of hair back then.  OMG PUBES!!  And that only goes as far back as the 80′s!  Yes, in the 80′s it was still acceptable for women to have pubic hair.

There are advertising campaigns bombarding us with every method of hair removal.  My particular most loathed are those ones on the radio for Brazilian laser treatments that refer to removing hair from your “cha-cha”.  I thought a cha-cha was a kind of Latin American dance style.  Well, that ties the Brazilian theme into it I guess, doesn’t it?  We’re told that having ANY hair on our bodies is unfeminine.  Skeevy names are given to areas of hair on the body, like “welcome mat” and “snail trail” and the like to imply that women with any body hair are somehow slutty or trashy.

What it all boils down to is that it’s a whole industry that makes an astonishing amount of money out of shaming women into feeling that their natural bodies are somehow less than perfect, and selling us a ridiculous fairytale of lies about how being hairless will affect our lives.  If you believe media and marketing on the subject of body hair, you’d believe that being hairless not only makes you hot and sexy and feminine, but it gets you the perfect husband, makes you successful in your career and ensures that you’ll have a legion of perfect little children who randomly bring you flowers just because “We love you Mommy.”  I think they expect you to believe that your being hairless makes your plastic jewellery turn into diamonds, your pets no longer smell and double rainbows to appear on your birthday.

Ok, I’m getting silly now, aren’t I?

But is it any sillier than being expected to believe that we’re somehow worth less because we have more hair?

That’s not to say you have to leave it there.  There is no reason why you can’t remove any body hair (or head hair for that matter) that you may have in whatever method you see fit or that works best for you.  But only if YOU want to.  Not because some advertisement tells you it’s shameful or dirty or unfeminine.  Personally, I love the feel of having smooth, hairless skin.  I don’t give a shit anymore what other people think of how much hair I do or do not have, but I do like to remove some body hair for my own personal preference.

I do remember when I did give a shit though.  I remember how embarrassed and ashamed I felt.  I remember feeling unfeminine.  I remember worrying about whether or not other people judged me by my body hair.  They don’t by the way.  Well, a few douchebags might, but do I give a shit about those kind of people?  NO WAY!  The people that matter, that are worth knowing and caring about, won’t even take a minute’s notice, and if by off chance they do, they could care less than you do.

You want to feel more feminine?  Then embrace your femininity rather than hating on something arbitrary like hair.  You’re under no obligation to BE feminine (and I should also add that levels of femininity are as arbitrarily judged as levels of hairiness and fatness and everything else that is given labels and standards) but if you want to do the things that our society deems as feminine traits, do them.  Don’t let your body and what it does or what it has or what it’s shaped like stop you.   What makes you feel feminine might be different to the next person, but that’s up to you.  For me, I grow my hair long (and colour it hot pink!), wear makeup, wear clothes that are considered feminine, that sort of thing.  That’s my personal way of feeling feminine.  It is totally arbitrary, but if it makes you feel that way, then go for it.

Don’t feel you have to perform to that “femininity” measure either.  If you want to leave your body hair grow to it’s natural state, then that’s ok too.  It doesn’t make you any less a woman.

Worried that a bloke might not find you sexy you if you have body hair?  Honey, if he really wants to get some of what you’ve got to give, he’s not going to give a flying fuck about body hair.  And if he does, well he’s not getting any of the good stuff from you then, is he?  Any man that shames you for who you are does not deserve to get anywhere near you.

Do you know the biggest lie?  The biggest lie, the dirty secret nobody talks about… women without PCOS have body hair too!  Yep, by far the majority of adult females have body hair.  Of course they all pluck and wax and zap and shave as much as anyone else.  Sure, statistically ours may grow a heavier, or darker, or thicker, but please, PLEASE don’t assume that means that non-Cysters are these hairless, so-called “normal” types that we are excluded from.  Uh-uh… women without PCOS are being pressured as much as we are to remove any trace of hair from their bodies too.  Sometimes, women are really hairy without having PCOS!  Yup, there are a bunch of other factors too.  Like location and genetics and race.  It’s not just about us, though we are pressured in a whole different way because ours is attached to our reproductive systems.

What it all boils down to for me is that we can spend our lives hating on our bodies because they do or don’t do something that our current culture and media/marketing tells us it should or shouldn’t do, or we can just make up our own mind how we wish to deal with what our body does and doesn’t do, and devote all that energy to things far more worthy of our attention.

I know which I’ve decided to choose.

Here’s Your Chance to Be Heard July 26, 2010

One of the things I think it is really important to get back to on this blog is our original focus.  When Barbara and I mooted the idea over a year ago, the central tenet of this blog was to give an alternative voice to women with PCOS who weren’t solely focused on fertility/child bearing and weight.  When we first started, we wanted to offer an alternative voice to what is already available to women with PCOS in plentiful quantities all over the internet, available in print and even from most doctors.  I outlined this somewhat in an early post, which you can read here.

I do think we’ve drifted back to that weight focus and fertility perspective, and while it’s important to acknowledge the validity of the need for blog space and other areas around those two issues, I feel the need to reclaim this space for those who feel like they are silenced by the sheer volume of material out there on fertility and weight.

One thing I think is important to acknowledge is that no matter what life path a cyster takes, her quality of life should be the single most important matter in her health care.  If we insist on quality of life being the central focus, then no matter what our choices are, we are improving our lives with PCOS.

Now I have some subjects I will talk about, particularly around self esteem, body image and leaning into some feminism.  But what I need to know from those of you who are outside of the babies and weight loss boxes are the subjects that you wish to hear about.  I need you to speak up – I know you’re out there, I can see the WordPress stats and the search terms you use that lead you here to this blog.  I am also looking for some of you to do guest posts, or at least share resource material.  We need the topics and ideas that you have, or we’re never going to have any influence on our health, lives and treatment.

We need to hear from the older cysters, the single cysters, lesbian cysters, those who have chosen not to have children, the fat acceptance cysters, and any others that don’t already have a space in the mainstream.

So please, comment below and be heard, or you can email cystersunited@gmail.com to discuss a topic you might like to write about.  This is your chance to create the conversation you’ve been looking for.

Kath

PCOS May Delay Menopause/Lengthen Fertile Years July 25, 2010

Thanks to @lilabris sharing this little snippet on Twitter, I got my hands on the relevant issue of New Scientist (Vol. 206, No. 2764 JUN 12, 2010) so that I could share with all of you.

A study from Shahid Behesht University in Iran has found that women with PCOS are just as likely to have children as non-PCOS sufferers, and that they have a better chance of conceiving later in life.  It seems that while we produce high numbers of follicles in our youth, which causes reduced fertility, unlike non-PCOS sufferers, we benefit from the natural decline in follicles as we get older, falling into a normal range of follicles on the ovaries at a time when other women are peri-menopausal.

They have also discovered that statistically, women with PCOS have as many babies as women who do not suffer PCOS.

The team at Shahid Behesht University also wondered if women with PCOS might reach  menopause later as well.  Their study found that the hormone AMH, a marker of ovarian ageing, declined to menopausal levels two years later in the PCOS participants of their study, than the non-PCOS participants.  This also supports the theory that women with PCOS have a better chance at conceiving later in life than their non-PCOS suffering peers.

Loneliness Among Many April 10, 2010

I’m currently going through one of those lonely cyster times.  They happen from time to time, the “eras” of my life as a PCOS sufferer where I feel like I don’t belong, even to this group of amazing women who know what it’s like to live in a PCOS body.

It’s difficult because you want to be supportive and encouraging.  You want the other cysters to know that what they are going through is valid, but sometimes you feel like you’re drowning in voices that never match yours.

What I’m talking about in particular is the whole fertility/pregnancy/baby/motherhood thing.

I belong to a LOT of cysterhood groups.  Forums, mailing lists, communities on Facebook, blogs, Twitter, you name it.  These women enrich my life every single day.

But inevitably every single group I belong to has huge numbers of women who want to talk about the whole breeding process.  Who want to share their experiences with trying to conceive (TTC), pregnancy, motherhood.  They want to talk about fertility drugs and tests and “baby dancing” and sperm samples and baby showers and diaper changes.  They want to talk about how other women have babies but they can’t, their feelings about constantly fighting the fertility battle, and the difficulties of pregnancy and motherhood with PCOS.  And of course, so they should, it’s relevent to these women.

I am not this woman.   Life hasn’t allowed me the luxury of even thinking about having children, as I am a single woman of 37 years old.  It was of no choice of mine, it’s just the way life is working for me.  Single cysters are not in this place in life.

Other cysters have chosen not to have children.  They are not the child rearing types, or have other things that take up their lives, like careers and travel and creativity that they have decided they value more than having children.

Then we have the lesbian cysters.  Many of them do not entertain the idea of having children.

Or those cysters who have tried for many years, but decided that it’s not going to happen, to move on with their lives.

This doesn’t even include the young cysters who aren’t in that phase of their life yet.  Or the older ones who are well out of it.

I know it sounds like there are a lot of us outside of the usual scope for women with PCOS, concentrating on fertility, but it has been my experience that these cysters either fade back to the shadows behind their child-bearing cysters, or just go the whole cysterhood road on their own, because it’s too painful or excluding to be part of a community that they don’t fit in to.

It has been my experience that even the most inclusive, friendly cysters group can descend into baby talk and nothing else at the blink of an eye.  It’s really difficult to feel like part of a community when all of the communities head into the same direction.

I do know I’m not alone.  I personally know (in real life, not just online), quite a few cysters who are not trying to conceive and don’t have any children.  Some out of choice, some not.  But I never hear much about how they feel, what things are issues for them around PCOS and how they cope with life as a cyster.  It’s like we don’t exist a lot of the time.

Don’t get me wrong, I love my TTC cysters and my Mommy cysters.  And I know it’s difficult for them to deal with all the issues that PCOS brings in TTC, pregnancy and motherhood.  They need to talk, and share support with other women who know what that is like.  I just wish I didn’t feel so excluded from womanhood and cysterhood by not being connected to the breeding cycle.

If you’re a cyster who isn’t TTC, pregnant or a mommy, give us a holler in the comments.  Do you find yourself feeling the same way?  What are the biggest issues for you in having PCOS?  If you like, share why you’re not part of the breeding cycle.  Is it out of choice or has life just taken you that way?

A Round Peg in a Square Hole March 28, 2010

My story is a little different to the other ladies in that I’m not centered around fertility.  I am also different to a lot of other cysters in that I do not believe that weight loss is going to either fix my PCOS or change my life.

My name is Kath, and some of you  might know my other blog, Fat Heffalump, which is a fat acceptance/body positivity blog.

I am 37 years old, single and what I like to call a Super Fatty.  That means that in the redundant BMI terms, I am morbidly obese.  However, if you knew me, you would know that there is NOTHING morbid about me (well, maybe a little bit of morbid when I’m really hormonal and my work is getting on my nerves, but that happens to the best of us).  I am just a very fat woman, and that’s where my body has decided I am going to be, despite a lifetime of diets, crazy exercising and every medication and wacky weight loss plan there is.

The first time I presented to a doctor with symptoms that I now know are PCOS symptoms, I was 12 years old.  I had gone from a “normal” sized child at 11 (though I was almost my adult height) to a fat girl at 12.  I had violently painful, irregular periods, and when I saw the doctor he just suggested I should lose weight.

Believe it or not, I did not get a formal diagnosis until 20 years later, at age 32.   Despite presenting to doctors time and time again with various symptoms that I now know are typical PCOS symptoms.

Almost always the “solution” was to lose weight.  One doctor, when I was 19 years old and went to him because I’d been bleeding full, extremely heavy period for 18 months actually said to me “Lose some weight, find yourself a fella and come back when you want to have babies.”  Nothing to address the massive menstrual blood loss, the rampant anaemia, the physical pain and the fact that I had a terrible quality of life because I was dealing with heavy bleeding every single day with no respite.

The irony is, when I did lose weight, and a LOT of weight (about 55lbs), my symptoms only got worse.  My periods were so painful I was in agony, though they only turned up every third month or so.  I had really bad skin and hirsuitism.  And the depression… God the depression was at it’s very lowest point when I lost that weight.

Of course, I put the weight back on and then some (despite having an eating disorder and being on crazy exercise binges) anyway, as extreme or yo-yo dieters almost always do.

So there came a point where I had to deal with my self esteem and depression first, more than any of the other symptoms.  I had to learn to stop expecting to meet some kind of physical ideal, and learn to value myself for other than my body and my breeding ability.

I have been learning to love my body for what it is, regardless of the fact that it doesn’t behave like most other women’s bodies.  I value the body that propels me through life, that does pretty much everything I need it to do, despite being a Super Fatty.  Believe it or not, I really feel that I am at my healthiest right now, despite my body being a very fat one.  I’m strong and enduring, I feel good and have good energy most of the time, and all my vital numbers are good.

I’m working to give up all the disordered eating and exercising habits I have had for most of my life.  It’s not easy, but it gets less difficult a little each day.  I am learning to listen to my body and nourish it with what it asks me for.  It asks me for what it needs if I take the time to listen to it.  If I don’t listen to it, it gets sick, lacks energy or breaks out in allergies or acne.

I am a single woman at 37 and not in a position to have children.  One day I would like to see that change, but it doesn’t make me less of a woman to be childless and single.  It doesn’t make my health less important than women who are trying to have families.  It doesn’t mean my quality of life should be any less, should be diminished because I am not breeding.  I am not deficient or defective because I am childless.  I have plenty to give to the world even though I am not giving it children.

I know there are many, many other cysters out there who don’t fall into the weight loss and fertility boxes when it comes to their needs around living with PCOS and I want to hear from these women.  I want them to know they are valid human beings who deserve good health and good quality of life too.

What Cysters United is About March 19, 2010

Hello again!

Welcome to Cysters United, as you can see we have a few contributers posting already, which is wonderful.  I really look forward to kicking this blog off into subjects around living with PCOS.

As Barbara mentioned in her post earlier, this blog was borne of a discussion that started by her posting on her personal blog that she wished she could find more real stories from women with PCOS (or Cysters, if you’ve not heard that term before) about every day life.  What is available to us are a lot of dry books on the medical statistics of PCOS, which can be terrifying, diet books and fertility information.  There is very little out there for women that do not subscribe to the diet/weight loss doctrine, who either aren’t at the stage of their life for having children, don’t want children, or have succeeded in having children.  There is very little for the lesbian cyster, the young cyster, the menopausal cyster, the child-free cyster, the the fat acceptance cyster.  So we want to create it here.

That doesn’t mean that we won’t be talking about weight loss or childbearing, for a few of our contributors it’s relevant.  But it does mean that we will be adhering to the fat acceptance/health at any size philosophies, which I will explain more later, and that talking about PCOS will not just be about fertility.

What I would like to see are you cysters out there that come across this blog joining in with discussions and blog posts of your own.  If you have any ideas on subjects you’d like to see us talk about, or would like to contribute a post, please email Cysters United at cystersunited@gmail.com

Cysters United March 13, 2010

Hello!

Welcome to Cysters United.  We’ve got a lot of plans for this blog, but we’re just setting up everything at the moment.  Soon we’ll each post to introduce ourselves and tell you why we’re here.

But at this point, watch this space for a blog about Poly-Cystic Ovary Syndrome by the women who live with it.