Reclaiming myself in 2014

At the beginning of 2013, I was freshly diagnosed with PCOS, stumbling along trying to eat lower GI, cramping badly from a recently-fitted Mirena coil and wondering if I'd ever have another period. I was expecting hair to start to melt away and skin to clear and happiness to sprout out of nowhere but I wasn't sure how I was going to get there. I didn't quite know what I was up against and it was daunting.

A year later and I'm in love with my Mirena, my skin's miles better and I've started to get the hang of which grains when with what (and why is wheat such an enigma?) I'm still steadily growing hairier and it's knocked my confidence a bit further but I'm taking steps to reclaim myself from this condition - steps which began in August when I said hello to hairy pits and realised that hair is just hair. In contrast, 2013 was also the year I was prescribed Vaniqa cream for hirsutism - and the year I said "Sod that," and stopped using it. I began to arm myself with more facts, went to my first Verity conference and started looking forward with a scrap of hope, rather than dread.

In 2014, I'm going to start talking in more depth about some of the things I've just mentioned, and I'm going to keep loving myself and turning every sweetie recipe into a low GI reality. 2014 is about self-care and agave nectar!

This new year, join me in my resolution to be my very best with PCOS and not in spite of it! XXX

Transvaginal ultrasound: what to expect

A couple of weeks ago, I had my fourth transvaginal ultrasound: it had been a year since I last had one and in order to get a specialist referral a full picture of the current clinical situation is usually needed (in my experience this is usually a combination of ultrasound and full STI screening). I barely bat an eyelid at them nowadays, but I remember how anxious I was before my first one, so I thought I'd write a post on what to expect.

An ultrasound scan (sonogram) uses high frequency sound waves to see what's going on inside the body. In a transvaginal scan, a transducer probe is placed in the vagina and moved around to visualise the uterus, ovaries and other reproductive organs. It may sound a bit scary at first, but it's a pretty quick procedure and if you let the person carrying out the scan know if you're nervous, they'll usually talk you through it as it's happening.

A quick video looking at the ovary during a transvaginal ultrasound scan.

The scan

• For a transvaginal scan, you aren't required to have a full bladder. If you are having an abdominal scan in the same session, you'll have been given instructions in your referral letter and you'll usually have this scan first.
• In the NHS, you'll usually be asked to undress from the waist down whilst the sonographer or assisting nurse leaves the room or draws a curtain. You'll be asked to lie back on the bed and given a big sheet of tissue to cover yourself with. Private hospitals may have varying procedures (my first scan was in a private hospital, where they gave me a fluffy dressing gown and told me to completely undress and pop my knickers in the pocket between scans. I was worried I'd leave them behind by mistake!)
• A transducer probe that has been specially designed for vaginal scans is used. It's fairly narrow at the end (probably not much wider than a super tampon, if at all) and the sonographer will put a condom on it and then a LOT of lube. You'll probably be finding it on you for the rest of the day.
• You bend your knees and spread them, similarly to any pelvic exam. The sonographer will gently insert the probe and look at different parts of your reproductive organs. If you don't usually get any pain with penetration, it shouldn't hurt. If that doesn't sound like you, let them know beforehand so they are aware it might be scarier for you. There might be some uncomfortable pressure when they move the probe to the sides slightly to get a better view of your ovaries. Of course, if you do feel any pain at any point, let them know!
• They'll take snapshots whilst they're performing the scan and then you're done! Sadly, you don't get a printout of this like you might in a pregnancy scan (that would've been great for this blog post). You'll be left to get dressed (after wiping yourself off - I told you there was a lot of lube) and the images will be analysed by a doctor, who'll send the report to your GP, usually within a week to 10 days. Make sure you know your GP's policy on test results - mine do not contact you at all, but previous surgeries have operated a "no news is good news" result policy.
• The sonographer might tell you what they've found if it's something they feel able to comment on. If it's your first scan for diagnosis, this might be that yes, your ovaries appear polycystic. If you've had a Mirena coil fitted (I have one as part of my management of PCOS), they might also reassure you it's still in the right place. At follow-up scans you might be told whether or not your ovaries have remained polycystic or if that side of things has resolved (mine haven't changed a bit, apparently). But try not to focus on this too much - wait for the report as your GP will be able to talk to you about options if a diagnosis is being made.

Above all, don't worry too much about it! It's a minimally invasive procedure and a really useful tool in diagnosing and managing PCOS. I hope this helps anyone fretting about their first scan.

Armpits4August, Armpits4ever, Armpits4me

Flaunting my pit kittens #pitpride

In my last post, I mentioned the fantastic fundraising efforts of the Armpits4August team. Last summer, they set up a now annual charity event, the premise of which is simple: participants do not shave their underarms for the month of August, and collect donations for this. All the money from this sponsored fluffathon goes to Verity, who can't afford to keep running as a charity without these donations! As well as this, it's an excellent platform for raising awareness of PCOS and its symptoms ("I'm being hairy because..."), and a ripe opportunity to reclaim your own body and challenge the societal ideal of a hairless woman.

I happened upon a brief news story about the campaign mere weeks before the month began and knew I had to do it, otherwise I would probably hate myself until the next one rolled around. As a woman with PCOS, I've spent perhaps the past year or so admiring body hair on a lot of my friends, but not believing I'd ever reach a stage where I felt comfortable enough to grow out my own. Supposedly "hirsute" (although I'm beginning to wonder what "normal" actually looks like), most of the problems I have with myself revolve around hair and the feelings of otherness they stir in me. Had it not been for Armpits4August, I'd quite probably never have felt strong enough to challenge those feelings - but I did.

I was terrified: I didn't want to tell people my reasons for doing it. I didn't want to have to explain hirsutism, because that meant admitting to people that I was hairy in ways they had never imagined. I spent a week sternly talking myself into it and made a JustGiving page so that I couldn't back out. It went live on the last evening of July. Before August arrived, I'd already raised almost £100. From then, I knew it would be worth it.
I threw myself into the cause. The first hurdle was telling my colleagues. A couple of exclamations of disgust aside, it wasn't half as bad as I'd expected. I bombarded all social networks with talk of hair and impatiently willed my pit kittens to grow. I kept an "armpit diary" and even went on BBC Radio to talk about it (I have friends in high places, if BBC Tees constitutes a high place, which I think it does!).

After a year of silence, I'd opened the Pandora's box of PCOS and I couldn't shut up about it! Everyone I spoke to got an earful about body hair; any premature discussion of Movember was met with interjections about my own hairy fundraising and I began to nurse ideas of starting a PCOS blog (well, here we are...). At the end of the month, I dyed my pits pink, as promised on my JustGiving page, and then, well, I kept them. It took me an entire month to grow them, after all! But more than a bit of fur in a place it should have been anyway, what Armpits4August gave me was pride in my own body. In leaving these two little patches of hair be, I feel so much more control than I ever feel in my frantic attempts to keep the rest of it at bay. I've not backed away from the tweezers just yet, but I've learnt to like my body. Thank you, A4A. Same time again next year?*

*(already taking suggestions for what I'll do now my armpits are already luscious and long)

Although August has long since been and gone, there is still time to make a donation at my JustGiving page until the end of November. Any amount is greatly appreciated!

To join the discussion about body hair in a safe forum, you can find Armpits4August on Facebook and Twitter.

Verity Conference, London 2013

Last weekend saw the PCOS charity Verity's annual conference take place. Held in a different city each year, the day is a chance for people with PCOS to learn about the condition from medical experts practising in the field, and provides a safe space in which to be open and candid with others about what you're going through. Verity work closely all year round with their team of medical advisers to produce brilliant information packs and a regular newsletter for members but being there at the conference adds an entire new dimension to the support they offer!

I went along to the Big Smoke to see what the conference had to offer. The day was rewarding but overwhelming and, as such, it's taken me a little while to write about it.

The conference was very central and I even squeezed in some night-time sightseeing!

Fresh off the train (and the tube and the muddled wandering around central London), I found myself at Dexter House near the Tower of London. Tucked away inside a palatial complex and guarded by imposing white gates, the venue housed smiling women in purple jumpers, who ticked off names and handed out goody bags. These women are the backbone of the charity and it's thanks to them the conference was even happening! I took my name badge and made a beeline for the free breakfast before things got going.

There were six main talks to attend, although with three of them you could choose only two of the set. Topics covered over the course of the day included: getting the best from your doctor, hirsutism, fertility, weight gain, the ins and outs of the menstrual cycle and the emotional ups and downs of having PCOS. Between lectures, there were stalls to browse, including the fantastic Armpits4August team, who raised half of Verity's total donated funds last year (and for whose fundraising campaign I renounced my razor this summer - more on that another time)!

The Armpits4August stall at the Verity 2013 conference

The thing about the day that really got me was that it felt like a safe space. At lunchtime (some low GI options were provided thanks to Verity and a very cooperative venue), a young group of us sat chatting away, starting off with the assumption that we'd all know what it was like to deal with some level of excess hair (although not everyone has this symptom!). Sentences began with tales of plucking, threading and shaving; questions were asked about relationships. We told and listened as everyone's experiences unfolded, and we knew were no longer alone. It's one thing to have frank discussions about your symptoms with close friends (and I'm lucky to have a brilliant and supportive set of pals in my life), but to share those chats with people who understand what it's like was something I hadn't even realised I'd been yearning for.

Three (of many) things I learnt at the Verity conference were:

• Fallopian tubes are amazing! During ovulation, an egg bursts through the ovary wall at whichever point is happened to be growing (ouch!) but the fallopian tube can detect where the egg is and uses its finger-like projections to "walk" across the ovary until it reaches the egg and sucks it up.
• The higher miscarriage risk we've all been warned about was based on old studies where the miscarriage was probably caused by the methods used to stimulate ovulation, and, as such, we most likely have only the same chance as anyone else of miscarrying (a question that was answered by Professor Stephen Franks).
• PCOS can sometimes feel isolating, but sometimes it can bring people together, too. And, you know what? Maybe I don't hate it, after all.

PCOS: the first few weeks

Last autumn, things finally started falling into place for me. After confirmation of PCOS by ultrasound, I  fretted for weeks. And then I decided to try and write down what I was feeling and posted it online. Here's what I wrote:

8th October 2012.
Over the past couple of years, I have not had a completely smooth ride where my health was concerned. I've come to know what it's like living with chronic pain day in, day out and to not know when I'd ever get any respite. And I've been a lucky one: daily life is now, for me, pain-free most of the time. I've come out of the other side of over a year of daily pain with the understanding of how that wears you down until you feel paper-thin and exhausted and overwhelmed by the relentlessness and unfairness of it all. Still, it's left its imprint on my life and general health now. Physiologically, things won't ever be the same as they once were. But I'm happy to take that instead of the stacks of painkillers I once took each day.

Until now, I had resigned myself (after scans, blood tests, private consultants, NHS consultants, surgery and various medications including too many hormonal contraceptives for one woman to take in such a short period of time - period being an appropriate word here) to being one of the "third of women who never find receive a diagnosis for what is causing their problems". And then, a month ago, I was diagnosed with polycystic ovary syndrome.

A month later and it still stirs up a maelstrom of mixed feelings when I think about it. A concrete diagnosis. A reason for a lot of the things I have had to cope with. But one which means the surgery I had last summer (diagnostic laparoscopy, to look for evidence of endometriosis - there was none) was unnecessary. One which means the contraceptives I was coerced onto were all wrong for me and one for which the signs were there in my first ultrasound, two years ago. Because of this, I am angry. Angry that a lot of the pain and hospital trips I went through probably needn't have happened. I lost out on a huge chunk of the "university experience", including study time and multiple exams. I am incredibly proud to have earned the degree that I did under the circumstances my health put me in, but now it feels like healthcare could have given me better chances. Of course, I am also relieved to know the cause of my problems, and to know that measures can be taken to treat them.

On top of this I am scared and, overall, sad. I am only 21 and nowhere near ready to have children, but I hate that it's been presented as a fact to me that I'm less likely to conceive in the first place, and far more likely to miscarry if I do. On top of this are the increased risks of cardiovascular disease, type-2 diabetes and endometrial cancer.

But PCOS is manageable, and already I've made lifestyle changes. I've been sticking to the low GI diet, exercising more and six days ago I was prescribed Metformin, to correct insulin resistance and hopefully bring my hormones in check. In a couple of weeks I will have the Mirena coil fitted (eek!) to protect my endometrium from hyperplasia and cancer. These are significant changes but I feel lucky that I have the chance to make them for the good of my health.

I deliberated over writing about this for a while, and even now I am anxious about posting it. I have not been particularly personal with my posts so far and it's alarming to think that many people I know could read this if they happened upon it (which they easily could). But I think that I should. I want to put me into my blog and this is an entire facet of who I am. I know that I personally would like to see blogs by women with PCOS (and I'm going to hunt them down), so why not mention it in my own?

A year later and I hope this will become one of those blogs I was desperately seeking. I was so scared to talk about this then and now you couldn't shut me up! This week is PCOS Awareness Week and it feels good to speak up! I still fret about PCOS sometimes, but it's good to see how I was feeling then and know now that it will all be okay. How about you? How did you cope with learning of your PCOS? Have your feelings about changed over time?

Sweet Enough Already: low GI banoffee pie

Of all the things I have to whinge about with PCOS, my new-found dietary restrictions are probably what I'm most vocal about. For me, keeping insulin resistance in check is a big part of controlling the condition. I have a killer sweet tooth: there's no way I'm doing without biscuits and puddings, so I've begun a personal quest to adapt as many desserts and snacks as I can into low GI delights. Last week I knocked up this banoffee pie - and the caramel is sugar free!

Ingredients:

• 1/2 pack digestive biscuits (medium GI)
• 1/2 tsp cinnamon
• 100g butter
• 2-3 bananas
• 1 tub cream (at least 35% fat or it won't whip!)
• 10 tbsps light agave nectar
• 1/2 tsp salt
• cocoa powder for dusting

Method:

• Melt half of the butter. Crush the biscuits (seal in a food bag and then smash with a rolling pin; or use a food processor). Combine with the cinnamon and the melted butter. Press the mixture into a greased dish or tin.
• Slice the bananas and make a layer of them on top of the biscuit base.
• For the caramel: in a saucepan, combine the agave nectar, six tbsps of the cream and the salt. Bring to a boil and leave on a lively boil for 5 minutes or until it really thickens up. Remove from the heat and stir in the remaining butter. Pour the caramel over the bananas and spread evenly.
• Whip the rest of the cream (preferably with an electric whisk - I used a rotary whisk and it took nearly half an hour!) until it's stiff and forms peaks. Add some vanilla essence if you want for a sweeter topping. Pour it over the top of the pie. If you have any leftover banana slices, decorate the top with them. Dust with cocoa powder.
• You're supposed to pop it in the fridge for a bit but I tucked right in. Enjoy!

PCOS: what's the deal?

A lot of people don't really know what polycystic ovary syndrome (PCOS) is and it's not always simple to explain! The thing to remember is that it's an umbrella term: the syndrome houses a lot of symptoms and not everyone with PCOS will have all of them, but that doesn't make them any less valid as part of your life with the condition.

Broadly speaking, PCOS is an endocrine (hormonal) disorder usually characterised by at least two of the following (taken from NHS Direct):

• "polycystic ovaries" - seen on an ultrasound scan your GP might have sent you for
• high androgen ("male hormone") levels - shown by blood tests
• signs you're not ovulating regularly - usually absent or infrequent periods but extremely heavy periods can also be a sign of this

Common symptoms include: irregular/absent periods, weight gain and carrying excess weight around your tummy, excess body and facial hair (hirsutism), loss of hair from your head, fertility problems, acne.

You might also have pelvic pain from the enlarged ovaries (either all the time or mainly during sex), depression and/or anxiety, signs of high insulin levels (e.g. skin tags, velvety darkening of the skin on your neck or armpits) and probably other symptoms too.

For me, the symptoms that I find to be the biggest struggle are chronic pelvic pain and excess hair. I often find that PCOS forums make me feel very isolated when I am having a bad patch because not many people seem to suffer with pain as part of their PCOS. It's important to remember that PCOS is different for all of us and you shouldn't feel alone just because you have a less common symptom! 

Polly: the PCOS blog

My name is Kitty (not Polly!) and I have polycystic ovary syndrome (PCOS). PCOS is a fairly common hormonal disorder which affects fertility, hair growth and various hormone levels. Although I am only 22, it's been meddling in my life for a good few years now, but I only got my diagnosis last year. I live in Bristol in the UK, where I'm often found determinedly trying to adapt junk food into hormone-friendly fodder, or pretending a pint of cider counts as one of my five-a-day whilst dancing around watching bands.


Most of the time, if I do mention my PCOS, I shy away from explaining the ways it affects me. It's one of the most common causes of infertility and most of us hide it because a lot of its features can feel embarrassing. As a result of this, I often feel alone and one thing that has frustrated me is finding not simply online resources (in itself not too tricky) but solace.
Forums can be great for sharing experiences and advice, but I've also often found them to be exclusive in times when I just needed not to feel so alone. I myself found it difficult to tell people about my PCOS until recently (I'll be blogging about the kick up the bum that gave me the confidence to talk about fertility and body hair to just about anyone who would listen!) but now I've opened that box I don't want to shut up about it!
Polly is my vehicle. Named for pol(l)ycystic ovary syndrome and created for other people like me, in the hope that maybe we can all feel a little less lonely in our lives lived under the umbrella term of this syndrome.

I'll be sharing my own personal experiences: how the symptoms affect me, finding a good doctor, medication and diet but I'm hoping to hear from other people and how it's shaped them. And really, I just needed an outlet for my low GI recipe adaptations and a more acceptable forum to shout about body hair and periods!