I Am What I Am Not *repost*

The following is reposted from my back-up blog, BM2. Whilst it is not the most cheerful thing I have ever written, it is part of me, and it feels wrong not to have it in the proper archives.

What follows is one of those times when blogging for me really is therapy. Feel free to look away now.

All my adult like I have been struggling not to be defined by what happened when I was 14. I refuse to base my personality on some thing that happened because a doctor refused to make a house call. But, no matter how hard I fight not to be defined soley by what I don’t have – what got taken away; what I had no choice or control over – there is inescapably part of who I am now that is because of it. I am who I am, to some extent, because of what happened when I was 14 and all that followed after.

It is not a conscious decision exactly, but I am the type of adult I am because – possibly – the traditional female role as incubator of the next generation is denied me. Or at the very least made a lot less likely.

I never wanted kids. Even “Before” I never was one of those to play with dolls or to be the “mummy” when we played grown-ups. I identified with George in the Famous Five, not Anne. I went through puberty with the knowledge something was a little bit wonky with my insides and it affected my outlook more than a touch. I looked at alternate pathways. The alt-pathway is so much more fun so I’m not unduly upset, I will hasten to add. 2.4 still doesn’t hold much appeal.

I am trying to express something that is not all that clear to me. Do I say I don’t want kids because the biological chances are slimmer and I am in self preservation mode, or because I really don’t want kids?

Why am I thinking on this now?

Because after ten years I have finally wrested a diagnosis from the doctors and that diagnosis is PCOS.

I have been tottering around some sort of diagnosis for years, but for the past six months I have been undergoing the latest in a long (and slow) running barrage of tests and explorations all designed to ascertain really how fucked my reproductive system is. We know it is screwed at least halfway round the thread, but is it tightened all the way down, that is the question?

I was dreading actually getting a diagnosis. I couldn’t put my finger quite on why till I forced myself to realise it is because I am not sure I really want to know. Getting answers means – well – it means you have answers. An answer of “actually, all is normal and tickety boo” peversely would still throw me as much as a “you’re totally screwed Ms Kemp”, because the former means I have no excuse. “I can’t” is somehow more acceptable than “I don’t want”. “Don’t want” just makes people smirk knowingly and count down the days till you conceive. Plus, “don’t want” makes you look selfish. “Can’t” gets sympathy.

“Can’t” and “look at other options” are part of my identity now.

Much though I thought I would not define myself by a negative, I am defined in my own head partly by my (potential) inability to bear children. To be told I actually could would, bizarrely, take away a crutch and force me to reevaluate my self out of my comfortable hole. Then again, the alternate diagnosis of “oh shit…” is not exactly a comforting prospect either. “Oh Shit” forces you to deal with different problems. To have it confirmed means… I don’t know what it means.

Basically, ignorance is bliss but my mum told me to get to the bottom of the matter and I am a good girl, so I am doing as I am told. A tentative PCOS diagnosis two years ago was nice. The assorted symptoms fit and it explained a lot but didn’t confirm/deny anything so I was still in blissful limbo land. The doctor (and my mum) wanted a final set of scans to make sure.

So I got the first scan only to be told the “Oh shit” option.

Turns out? The “Oh Shit” isn’t much fun either. It is never a good sign when the radiologist goes silent and mutters “oh dear…” under her breath. Oh goes “Wow…” when measuring bits and pieces on the screen. Turns out a 6.5 cm cyst is not the best thing to have. What would have been nicer is that she could even have found the other ovary at all, but it is probably just very good at hiding.

That’s it. No “worry/don’t worry” just a “my Grandma, what big cysts you’ve got”, which completely looped me out. Of course the NHS website is very soothing about these things and logic dictates if it was seriously worrying I wouldn’t have to wait 6 weeks for a follow up, but even my basic understanding of biology leads me to think an unexplained lump 6.5 cm big anywhere in your body is not a good thing to have.

At the end of the first scans I was further down the Oh Shit branch of reasoning and – you know what? – it is not that comforting after all to have a decade of suspicion reinforced. It would have been nice to have it all over-turned and be forced to reevaluate myself as a “have options” girl instead of firm up the “no chance” argument. Save me from pity. Save me from myself. Save me from my brain hurtling round my head at a gazillion miles, with none of the stations it is likely to stop at looking particularly inviting. I am making a mountain out of a (fairly) large cyst, I know that, but experience tells me to plan for the worst. I am reaching hatch-battening time and dear god I think it is going to be a big storm.

I got the results of the second scan and, as expected, PCOS is where things are at. All things considered, it was more a storm in an extra-large Starbucks mug than anything else. Still stormy, but it could have been one hell of a lot worse.

All the way through I was convinced that ignorance and “who the frack knows what is going on in there?” were bliss. I would rather have kept at the guessing stage than the whirlygig my thoughts and emotions have been on lately. But now I actually do know what is going on, I am rather comforted. As there was never any chance of a “you are normal” diagnosis, the diagnosis I have been handed is about as “nice” as could have been expected. On the scary scale we are talking a PG as opposed to a full on straight-to-video 18+ it could have been.

Labeling things is so very satisfying I find. Once you name something, you set limits on it, make it definable, approachable, surmountable.

I can see a way forward now. I know my options and I know what I have to do. At the same time I don’t like it confirmed that from now on I am the girl without her health. My body is making it very hard to be anything other than the girl who defines herself by what she hasn’t got. I am rapidly becoming the girl I never wanted to be. The girl who others pity. Seriously, if I was a dog you would have had me put out of my misery by now!

I saw the speech therapist the other week and we got to the bit of the consultation where you have to list your medical history. Ten minutes and several pages of notes later, she said “My, that’s quite a lot to have happened in one so young” followed by her being annoyingly (but sweetly) sympathetic and asking if I had had counseling to help. Actually, I have. She asked me if I was angry. I was.

For the longest time I was very, very angry at the doctors, at myself, at the universe, at my family, at everyone. But anger just takes it out of you and now it it is just the situation I have to deal with. Things could be worse, things could be better. Things just are. Why waste your time wishing things were different? This is the life you have to live so you might as well get on and enjoy it.

She says, over and over, because saying something often enough will make it come true.

I have PCOS. Many people have it worse than me. It turns out that the assorted medications I could take to help are, for one reason or another, not suitable for me. Which is a state of affairs that doesn’t surprise me if I am being honest, because I never was one to make it easy on myself. So I am left with lifestyle change and a future that is just so depressingly healthy.

I think that is what is bugging me most now. Oh, for a magic pill I could take to make everything all right and that would let me keep on living life (and eating) as I want to live life and eat. But there is no magic pill. I need to take responsibility for myself, depressingly grown-up though that sounds.

*shrug* It’s all character building, right? If nothing else it means I have things to write about on the blog.

*update*
I’ve got some amazing and touching responses to this post – thank you.
If you’re worried you might have PCOS, you have PCOS or you know someone who does, I would recommend you talk to a healthcare professional. There are also lots of very good support groups out there such as Verity in the UK and these in the US.
If you want to talk to me, but don’t want to leave a public comment, please feel free to email me on cas.brightmeadow[at]gmail.com

14 thoughts on “I Am What I Am Not *repost*

  1. Thank you so much for sharing this.

    I have the blood work form to get done to find out if I have PCOS. My husband listened to a medical podcast a few months ago that described it, he called me up and said, “I swear they just described you”. I listened to it and said, wow well that would certainly explain a lot of things.

    In January I saw my OBGYN and mentioned it to her. Gratefully I’ve been seeing her since I was 13, so she knows my history. She thought she remembered me testing negative but felt it was worth checking especially since there was nothing in my medical records.

    So now I have to make time to go get stuck by some needles and see how my results come back. There’s a part of me that is almost hopeful for explaining things over the years, and I’ve never been the happy home maker can’t wait to have kids person. But at the same time, IF I did want to have kids, I didn’t want there to be a whole basket full of issues.

    Thanks again for sharing your story, it’s really helpful to hear of others dealing with similar situations.

  2. *hugs. As someone who last year also finally got my diagnosis of pcos and endemetriosis, I know the mixed bag having a name to something is. If you ever need to chat you know where I am. As someone who has never been girly by any definition, for me having a girl illness woke me up – it may sound odd but having such an illness can’t help but remind you are a woman LOL.

  3. I’d like to say I’m sorry to hear that, but as someone in the medical field, part of me can only rationalise this from a purely objective manner.

    All that I can say truthfully is that…now you know. Now you can do something about it, with it or even around it. It’s just one of those things in life we have to take one day at a time. Where it goes from there depends on how we play this game.

    But we’re here for ya Cas. It doesn’t change who you are one bit.

  4. I too was diagnosed a couple of years ago with PCOS after spending the past 15+ years with a bunch of seemingly unrelated symptoms that no one could put together. It wasn’t until I read an article in a fashion magazine entitled “The Real Reason You’re Not Losing Weight” (which I was originally going to skip) that I first heard of PCOS. As I went through the checklist of symptoms, I found myself saying yes to almost all of them. I called my doctor the next day.

    After 3 ultrasounds and seeing a OB/GYN who specialized in this sort of thing, I finally got an answer. And that was about it. There was some discussion about medications but they either made me sick or weren’t suitable for my situation. Essentially short of taking out my ovaries or, as you mentioned, changing to a very healthy lifestyle (which wouldn’t be so bad I suppose) I was not given much else in the way of guidance, advice, etc. However, at least now I know.

    Like you, I never wanted to have kids. However, it wasn’t until I read your post that I really thought about it. Was it an unconcious reaction to something my body secretly knew but no one bothered to tell me about. It never really bothered me before my diagnosis because I looked on it as my decision not to have kids but after reading about the fertility problems women with PCOS have, it was as though the choice was taken away from me. It was no longer my decision. The switch from won’t to can’t as you described.

    I’m not angry about it. Well, not really. It still upsets me that I am one of those women that have unfortunately lost a lot of their hair (I’ve been wearing a wig for the past 7 years), and my extra weight has pooled around my middle while leaving my legs and arms slender. I’m upset that no one had thought of this diagnosis when I was in my teens and confined to my bed in a fetal position a few days each month, and when my hair first started thinning.

    However, there’s no looking back, only forward and I have to admit that finally having a diagnosis (even if there wasn’t much they could do for me) was a relief. Thank you for sharing this with us. Your post was very touching.

  5. Diana, – All I can say is good luck and keep through it. A word of experience though – blood tests aren’t always conclusive as the results you get depend whereabouts you are in your cycle. (It’s all to do with the ratio of different hormone levels and I’m not really qualified to explain!) From what my doctor told me, the only way to really know for sure if you have polycystic ovaries or not is to get an ultrasound scan to have a look. Basically, if you don’t get a satisfactory answer the first time around, keep asking till you are satisfied.

    Also, if you are worried about getting pregnant, PCOS doesn’t mean you can’t. It might mean it takes a bit longer, but the practice is always fun, right 🙂

    Tam – thank you, and *hugs* right back at ya. And it’s true. There is definitely no doubt now that I am a woman! 🙂

    Edrei – yes, now I know. Some part of me wishes I could go back to blissful ignorance, but on the whole I’m glad I know. As you said, at least now I know what I have to deal with

    Karen – I also left the doctor with not many options other than “healthy living” and it was very demoralising to think that I was as informed as the professionals after 30 minutes of Googling! One thing my doctor did recommend is the GI Diet – I am tip-toeing around the idea of starting it (I’ve brought the book and have already cut most bread and pasta from my diet – which wasn’t that hard as the evil pills made me not want to eat anything!) It’s a bit early to say if it is really helping or not, but I have lost about a kilo in 3 weeks which is more than in the previous six months of solid gym attendance combined!

    Thank you everyone for sharing your stories. Diana and Karen, welcome to Bright Meadow and the comments 🙂

    I shall end with two bits of wisdom:
    As one of my best friends keeps telling me, we all rock, rule the universe, and generally are a set of kick-ass people. Followed by something my dad always says – smile and be happy for the world will get better.

  6. Has your doctor mentioned the injection you can have which basically fools your brain into thinking it’s menopause time but only temporarily? It may be because I have pcos and endometriosis but this was the option I had and it didn’t work for me but some women have had great success with it. As for having children though way I see it there are plenty in this world if you do want one and end up in worst case can’t.

    I’m having a full hysterectomy and whilst it may sound very final least I know that with this one operation all my illnesses go away – can’t have illnesses with bits you do not have – and as I said even if I do want children I can adopt. I will also note that during the time I was getting my diagnosis I went from a size 26 to a size 14 so you can loose weight with pcos – ok I’m no size 10 but I’m 5ft 8 and to be honest I reckon a woman should have some curves. My husband is on a wheat and diary free diet so by default I ended up on an almost wheat and diary free diet which I am fairly sure helped me. I found that and the gym a huge benefit in my loosing the weight – yoga also helps with toning up things and giving you time outs.

  7. Hey Lady.

    Big Love, but you know that anyway. I’ve just been told I pretty much DON’T have it, after your tests this year made me go back and quizz some things.

    Which is odd on different levels. There is nothing wrong, this is just me. It isn’t perfect, but it isn’t ‘ill’; nothing pathological. Which leaves you and me in the same boat, bizzarely- with the getting fit and staying healthy and keeping on top of such things.

    Oh, and the kids thing. I’m a won’t. I know it’s selfish. I also thinks it’s unselfish; I don’t want kids. It would be the worst thing in the world to have them if I have any doubts about it.

    I have to constantly deal with people telling me ‘you wait. Hormones will kick in…’ Makes me so angry- How am I supposed to start a career as a serious academic, when I start looking at age 29, and people assume that I’m going to want kids in the next five years before ‘time runs out’.

    They aren’t supposed to assume, they aren’t supposed to base any decisions on it, but ALL of the male academics I have spoken to in the last 3 or 4 years have made the same assumption; that in my 30’s the person I am will change irrevocably and I will NEED to have children.

    So like you, sometimes I wish I had a ‘can’t’ ; not because I’m worried people will think me selfish, but because I can seriously see it affecting my career!

    Thoughtful Neko…

  8. Tam – after my last trip to the doctor I was left with the urge to jump under a bus on the way home. The man was not helpful. I will be going back for a second opinion, but I need to feel stronger first. It’s rather silly when you have to feel well before you can see a doctor, but I don’t think I could go through that again! Silly man. Grrr. But that will teach me for saying “OK, I’ll see the locum whilst my normal doctor is off sick”.

    At the moment, things aren’t so bad as to make me look at serious medical options. If the first lot of pills had been an easy fix, great, but they weren’t and have kind of made me wary. If I can manage things another (non medication) way, then I’d rather give that a try first.

    Of course, I fully reserve the right to change my mind when (if) symptoms start getting truly nasty again!

    Neko – hey you too 🙂 That’s good news that you don’t have PCOS, but I totally understand the whole mystery not-feeling-quite-right stuff. But fit, healthy, on top of things is a good plan. If you can do it, I can do it.

    Perhaps we need to get badges made or tattoo it on our foreheads “we’re not freaks of nature, we just don’t want kids!” I had the “but isn’t it time you should be thinking of settling down Cas?” conversation with someone at work today.

    Settle down? Me? Never! I plan never to grow up if I can help it!

  9. Neko – thats nonsense. You’ve been talking to the wrong academics. And Cas, big hugs too – and I know you know better too. You two are both stars. A long long time ago I had some (obviously second hand but up close and personal) experience of your recent blog entry. A big bag of confusion from what I remember, although I was 18. I’ll tell you over a beer in the old Marshal’s! Hugs. GH x

  10. Mr GH, I know there are some good eggs out there, but you’d be surprised about just who I’ve had that conversation with. You’d be surprised ’cause you are one of the good eggs!

    I guess it’s a touchy subject for me at the moment- last week i turned the same age as my Mum was when she had me, and it prompted some soul-searching!

  11. Cas – Just logged on after the insanity of my November (exams, emergency flight landings and devistating storms) and am going through and reading all my backlog of favourite blogs.

    I think this, like any major illness can be life defining. Of course it is. Okay you are not “I have PCOS and probably can’t have kids girl” but how you handle this and the attitude you take does in some way define who you are. You wouldn’t be the person you are without it and perhaps not the person you need to become.

    Neko – of course it’s still an issue, I’ve come up through the corporate world (am now working to do the academic thing) and didn’t realise how much of an assumption it was about me. Mainly by older men who thought of course she’ll go off in a couple of years and have kids and then she won’t come back… Now considering that I fall into the Don’t Want category and that if by some stroke of fate I actually did have a kid I definately wouldn’t want to give up work, well let’s just say they were making assumptions about their wives not me.

  12. Welcome back tc and I’m honoured you’ve come back to read what you missed!

    A few months on from the diagnosis, I will say that it has been the aftermath of the diagnosis which has been more life defining than the illness itself. On a day to day basis, the PCOS doesn’t affect me noticeably – the various symptoms have been my ground state for all of my adult life, so they are just my normal. What has thrown me most of all is my response to the first treatment my doctor offered. Pills which were supposed to help (primarily with inability to loose excess weight) napalmed my digestive system and trigged full-blown lactose intolerance and other sensitivities which mean I am currently living on a VERY healthy diet.

    Few people know more than I, what you can do with a humble roasted vegetable…

    I have spent longer talking to my doctor and working out how to live with my altered dietary needs, than I have talking to her about the PCOS.

    I will say, now it’s a good six months and more down the line from diagnosis, it has helped more than hindered to have a label. It gives me something to move past. As you said, it happened and has, no matter what, shaped who I am to a certain extent. I just have to keep working on making sure that person I am becoming is positive and not negative!

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