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!