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.

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

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.

The second round was nothing short of a nightmare.

After almost 35 years I’m more comfortable in my body than I have ever been, but that doesn’t make me like it any better. For 33 years have I taken care of my body and for 21 years has it betrayed me over and over. The weight gain when I made no changes to my eating and exercise habits, the years of having to shave my chin because it decided not to function properly, the mental and emotional scars I have to live with because something went wrong somewhere and the body I counted on and cared for for 12 years decides it doesn’t want to work anymore.

That is not even taking into account the ever increasing medication load as more and more fails to work right. I have been forced to let it go the last two years because my mental status, half of which is caused by my body, has deteriorated so much that I am having trouble with basic functions. I take over ten prescription pills a day, and still fail to live a normal life.

I define my body as a toxic relationship. Anyone who I spent 33 years caring for and they spent 21 years betraying and failing me would be dropped out of my life before they could say ‘sorry’.

I know that it will never live up to the expectations I have for it, but it doesn’t even try. Nevertheless this is one toxic relationship that I have to continue with. I have just increased my exercise to include tai chi classes and will be increasing it again in July. I think I’m going to add morning rollerblading sessions.

I am motivated to change it because I hate it.

I’m curious about your take on it because PCOS has such a huge impact on the body, and teeth aren’t something normal doctors look at.

The other thing that kinda makes me mad is that most doctors refuse to give a woman who hasn’t had children these options. And places like Planned Parenthood refuse to give a woman one unless you’ve had 2 or more kids! I’ve read the literature on them, yes there are some risks but the pills have risks too. And they are relatively easy to remove so why the heck can’t women who haven’t had kids yet, or may not ever want kids have them? Because having babies is apparently the one thing every woman should aspire to.

But if you think about it, giving it to women who don’t want to have children makes more sense than giving it to a woman who is thinking of children in the near future. And that’s the end of that rant, wasn’t sure if it should go on here, but here it is.

Unfortunately this is probably going to make me a bit nervous when/if I meet his mother at some point. Because I know she already has a less than happy opinion of me based on a photo that is something like 5 years old, and from before I was diagnosed. And in that time I lost a little weight in the areas that I needed to so I have a woman’s figure. I won’t say that it didn’t hurt hearing about this but I can roll with the punches. How about you? What have you all dealt with when being introduced to your significant others family?

Barbara

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?