Vulvodynia, what is that *exactly*?

Here's a couple of humorous write-ups that accurately describe the agony and frustration of vulval pain. Warning: swearing, lots of it!

"I’m ready to take my vagina out of early retirement. I don’t know if I’ll find an effective treatment, but I’ve come to realize I deserve the effort of looking for one."

My thoughts exactly! Meghan Rowland, 'Unlocking the Venus Fly Trap: the horror and humor of coping with vulvodynia'. 

"I had an epiphany. 'F*** that', I thought. 'If nobody else is talking about Vulvodynia I will. It's a medical condition that has absolutely nothing to do with my sexual preferences. Why am I so embarrassed to talk about my vagina?' So I am telling you, the internet, about my broken vagina."

"Considering how common vulvodynia is, it’s shocking how few people know about it. I’ve come to realise that when it comes to women’s health problems, we can’t wait for doctors to figure out what’s wrong and how to help; we have to educate ourselves and our doctors, leading the way in our own healthcare."

 One day I'll 'come out'. In the meantime, I'm telling all my friends individually (if I think they can cope with the TMI-factor)!  The Vagenda, 'TMI Special: Vulvodynia'.

New diagnosis

Well, hello! I've been a little, erm, absent from this blog for a while. Mostly because my symptoms where, for a large part, under control and barely troubling me. Until a fortnight ago when I had a massive flare-up. I have been in constant pain since.

I went to see my GP. I haven't been to the practice before with this particular issue. But they've been very kind to me and provided excellent care for my other chronic health issues (OCD/anxiety and asthma). I explained the whole sorry saga to her - how I have been variously dismissed and treated like a neurotic by various doctors and specialists over the years. And guess what? She came up with a brand new diagnosis. Something with which I am familiar, but which was very difficult to find any information about a decade ago and which, when I suggested it to my then GP, was completely pooh-poohed.

I have a 'neuropathic pain disorder' - vulvodynia by another name. Basically, vulval and vestibule soreness, burning, aching pains, with no obvious cause. It is, apparently, little known, little understood and estimates reckon, massively under/mis-diagnosed.

I could've cheered/hugged her when she calmly stated that she's seen several cases like this before AND that there are effective treatments available.

I cannot convey how delighted I am to have a diagnosis at long last, but equally angry and appalled at the lack of care I've received in the past.

So, I've been doing some research. There is loads of information now available. Even the NHS has an informative web-page on vulvodynia. The Vulval Pain Society has loads of resources about different medications, advice and support.

I have discovered that the repeated treatment with topical anti-fungals may have worsened the condition and that the reason why the anti-candida diet helped me is that it overlaps in some quite fundamental ways with the low-oxalate diet, often recommended for women with painful vulvas.

I have some treatment options. The GP suggested that I go on amitriptyline - not because I'm depressed, but because it interrupts nerve signals. But that would also require me to come off citalopram - which I take to help control anxiety and OCD. And it's very effective. I'm reluctant to go down that route, therefore. Another option is gapabentin - an anti-convulsive, but effective at reducing nerve-related pain. There are also topical anaesthetics -should I ever find myself in a relationship again (unlikely, frankly!) - physiotherapy exercises and, as a last resort, surgery.

But to begin with, I might see about this low-oxalate diet and try the things that seemed to help before: yoga and acupuncture. And, no more 'orrible plastic sanitary towels (I think they may have triggered the current flare-up). It's reusables all the way from now on.

So, I'll be shifting the focus of this blog slightly, accordingly. I want to keep a record of what works, and perhaps reach out to other sufferers of this rotten condition. Because I know you're out there somewhere...

Recipe: Warming Coconut Noodle Soup

A quick update...

Over Christmas I went a little nuts, ate lots of sugar, too much meat, etc, and ended up with a nasty dose of my old 'friend', not to mention absolutely dreadful indigestion. Yuck. So, I'm going back to basics, at least until my system gets back on track. It's back to checking labels and not eating out for me. Boo.

This evening I really fancied something noodley and spicy and coconutty. The red chilli sauce I normally use as a base turned out to have corn syrup in it (I swear it didn't use to!), so I had to make do with other ingredients. This is what I came up with. It was surprisingly delicious and made enough for two generous servings.

Warming Coconut Noodle Soup


2 cloves of garlic, finely chopped (or as much, or little as you like)
1 red chilli, finely chopped with seeds
About an inch of ginger peeled and shredded
Sesame oil
1 tin of coconut milk
1 yeast-free stock cube dissolved in a 1/4 pint boiling water
juice of 1 lemon
1 tsp ground coriander (adjust to taste)
1 tsp basil
1 tsp ground cinnamon
half a tin of Marigold braised tofu (inc. the juices)
a sprinkle of Maldon salt
freshly ground black pepper
half a large onion, finely sliced
1 red pepper
a couple of handfuls of lettuce or something 'green'
1 nest of noodles

Add a splash of sesame oil to a hot wok. Add the garlic, ginger and chilli and stir for a few moments. Add the onion. Fry for a couple of minutes, until the onion is starting to soften and turn golden. Add the red pepper. Fry for another couple of minutes until the pepper starts to soften. Add the basil, coriander and cinnamon. Stir well and fry for a few moments to release the flavours.

Add the coconut milk, stock and lemon juice. Stir well and bring to the boil. Turn down the heat and add the 'chunked'  braised tofu and juices (the liquid aminos replace traditional fermented soy sauce in this recipe). Stir and allow to simmer for a few minutes. Add the noodles. Coat them well in the soup mixture. Allow to bubble away and thicken slightly.

When the noodles are just about cooked, add the seasoning (to taste) and the lettuce. Give the mixture a good stir. Once the lettuce has wilted, the soup is ready to eat. Yum!

Wah! Where did I go?

The blog disappeared for a few days when Blogger's automated system decided seemingly arbitrarily that it convened the terms and conditions. After a bit of foot stamping, I got an apology and the blog was reinstated. Phew! My apologies for any inconvenience caused while The Cardboard Diet was offline.

Diabetic Chocolately Awesomeness

I've recently come back from a trip to Vienna, with a brief stop-over in Belgium either side. Belgium is not my favourite place on the planet. Don't try to change my mind; I will stick to my guns. But one of its (few) redeeming features is the range and availability of sugar-free (principally aimed at diabetics) confectionery. I managed to to pick up great slabs of two varieties of chocolate, chocolate coated waffles and a sugar-free Nutella look and taste-alike in a smallish supermarket in a provincial town for around 14 euros. Most of my haul was (I use the past tense as most of it has been consumed already - whoops!) sweetened with maltitol but some made use of a sugar substitute called Tagatose. It tasted okay but I have to confess feeling a little wary of it, it being entirely new to me. Anyone heard of it?

Apologies from me

Many apologies if you recently left a comment on the blog recently and it's gone unmoderated (until now). Just discovered that Gmail has been sending all notifications to my junk mail filter. Doh! Will do better in the future, promise.

Sweeteners and Sugar-free Living

A Twitter friend thinking about going sugar-free (not for Candida-related reasons) recently asked for some advice on dealing with sugar-cravings. I thought it might be useful to reproduce what I told her here.

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Okay - if you were being really serious about this sugar-free thing you would go cold turkey. After about two weeks you'd stop craving sweet things and start to be able to better appreciate the natural sweetness in fruits and even some vegetables, like carrots and beetroot. But that would be absolutely no fun at all! So here's my advice:

#1 Avoid aspartame like the plague. Anecdotally it has been linked to all sorts of nasty complaints including neurological disorders. Also, it kids the body into thinking that you're consuming sugar, raises your insulin levels accordingly (I think?) and makes you feel shaky and more hungry. Not good.

#2 Also avoid maltodextrin, sorbotol, sucrose, glucose = all refined sugars.

#3 Fructose is concentrated fruit sugar and is okay in emergencies. It can be used in place of caster sugar in baking (though you only need 1/3 as much) and can be picked up in most supermarkets and health food shops.

#4 Cakes, biscuits, sweets and chocolate sweetened with maltitol (a natural sweetener derived from wheat - body doesn't recognise it as sugar) are a-ok from a 'no sugar' perspective. This is the sweetener most commonly used in products aimed at diabetics. It can sometimes have a strange after-taste - though in the time I've been sugar-free, products have massively improved in terms of taste and quality. It can also cause flatulence and diarrhoea (if you scoff too much of it at one sitting!). However, in my experience your body gets used to it after a while and the side-effects are less explosive. ;) It also helps to keep other people out of your chocolate stash if you tell them it will give them the runs!

#5 Agave syrup is becoming increasing available as a baking ingredient and as a sweetener in 'healthy' processed foods. It's derived from cactus and has been used as a sweetener for centuries. It has no side-effects, as far as I'm aware. It is certainly VERY sweet and is good in hot chocolate. You can get it in many larger supermarkets now (baking/sugar aisle). Booja-Booja chocs and ice-cream are sweetened with it. The choc ice cream is AMAZING. But you can only get it in small health food shops and fancy delis. Waitrose stocks a similar type of ice cream - though I think that's sweetened with fruit juice instead.

#6 Xylitol - the God among sweeteners as far as I'm concerned. It's derived from beech trees and has been used in the frozen north for centuries. It has no side-effects, as far as I'm aware. However it isn't commonly used in products at the moment, except in mints - because it also, rather miraculously stops and even repairs tooth damage! You can use it in baking, in the same quantities as castor sugar. I have managed to make fudge with it, though in that quantity it had a rather odd cooling taste. It can be bought in health food shops like Holland & Barrett. I've rarely seen it in supermarkets.

Some individual products you might enjoy: chocolate sweetened with fructose or maltitol. Many varieties. Available in health food shops like Holland & Barrett and Healthy Living. I have no one favourite brand. Belgian manufacturers are worth looking out for. Most expensive doesn't always equal the best.

Nak:d bars. Available from most large supermarkets as well as health food stores. These are sweetened by their high fruit content.

Village Bakery nut bars. Again, can be found in supermarkets and health food shops.

Bear Nibbles - fairly new, can be found at some supermarkets (Asda, Waitrose) and Holland & Barrett.

Dried mango. Delicious.

Good Earth fizzy drinks (Cola, Cranberry, Lemonade) - sweetened with agave. Available at Holland and Barrett. They also do decent ketchup and baked beans.

Some Boots diabetic confectionery and biscuits. Some is sweetened with sorbitol and aspartame (BAD!); some has maltitol (GOOD, but farty!).

A word about Stevia. If you decide to do some baking, many North American sites suggest Stevia as a good sugar substitute. Do not try to find it on the high street; it's banned in the EU (linked with male infertility!!!).

That covers nearly everything. One thing you do need to consider: many of these products are really quite expensive. It's worth experimenting with things like fruit purées and honey if you intend to do a lot of baking.

Goodies from the International Supermarket: Mulberry Syrup

Wow, no posts for three months, and then two come along at once! ;)

Living in Leicester is a privilege. It is one of the most multicultural cities in the UK - indeed, it may now have become Britain's first minority majority city (a title fought over with Birmingham). One of the happy results of this melting pot of cultures is access to a vast and diverse range of food stuffs.

A good place to shop for exciting ingredients is Narborough Road, in the West End of the city: a long stretch of Asian, Polish, Lithuanian, Turkish and African supermarkets, restaurants and hardware shops, with a few 'traditionally English' pubs and bars thrown into the mix, a couple of charity shops, a Wilkinsons and a great secondhand bookshop called Tin Drum. I spent the weekend cat-sitting that side of the city and took the opportunity to visit the 'International Supermarket' (does what it says on the tin), where you can buy Eastern European, Turkish, Lebanese and Syrian tins and packets and cartons and boxes. Bliss.

I'm planning to devote a few posts to each of the ingredients/foodstuffs I purchased, starting today with Mulberry Syrup.

A friend of mine who follows a low GI diet, alerted me to the existence of these jarred fruit syrups - grape (a candida no-no), carob and mulberry - which I believe are Eurasian (for want of a better word) and Middle Eastern in origin. Mine is Turkish (with a German label). It contains nowt but concentrated fruit syrup, dark and viscous and delicious-looking. I haven't yet tasted it; I don't want to open the jar until I know what to do with it.

I have found a 'recipe' for Sharab el Toot: a refreshing summer drink from the Lebanon. I'm sure xylitol or agave would replace the sugar content quite adequately. Quite possibly the mulberry syrup au natural would be perfectly sweet enough for my adjusted palate. I really don't know; I've never tried mulberries! There's also this: a milk and mulberry pudding, which sounds equally interesting. Again, I would substitute the sugar for agave or xylitol, use semi-skimmed goats milk and pick up some rose or orange blossom water on my next trip to Narborough Road!

So, candida diet hive-mind? What would *you* make with it?

Candida Can be Fun! A Book Report

Wow - doesn't time fly? No updates generally means nothing of any import to report, which is kind of true. Though I am aware that I had promised to give some feedback on the recipes in Rebecca Richardson's Candida Can be Fun!.

Overall I am very impressed. As I said in my last post, the simple fact that Rebecca is British makes it so much easier (for me) to source the ingredients and work out cooking instructions. Yes, North America, we *are* separated by a common language. You wouldn't believe how much time I have spent in the past trying to decipher recipes! A down-to-earth, realistic book with simple and genuinely tasty (and adaptable) recipes has been sorely lacking; an oversight which has been admirably resolved here by Rebecca. I have tried several of her recipes to date, and nothing has put me off trying further ones in the future. For instance:

Beef Mulligatawny Soup on p. 43 is absolutely delicious; really quite special. Though, when it came to it, I rather wished I had not tried to blend it with my handheld. This needs a good whizz in a 'proper' goblet liquidiser. In the future I will use all the same ingredients to make a casserole instead, which will be just as good.

Hungarian Aubergine with Polenta (p. 73) was really tasty. Invest in some good quality paprika for a lovely, full-bodied smoky flavour. I wasn't so thrilled by polenta though - not to my taste. When I make this again, I shall substitute rice.

I've made Sesame Seed Parsnips (p.103) several times. A good, simple recipe that helped me work my way through the enormous quantities of these not-so-favoured-by-me root veg that showed up in my weekly veg box earlier in the year.

Tabbouleh (p. 121) made with quinoa instead of bulgar wheat was fantastic and even better the next day after the ingredients had marinated together in the fridge overnight. Ate it in various combinations with other ingredients over the following three days and didn't get bored.

Courgette and Butternut Squash Pasta on p. 62, has been my only disappointment to date. It's the sort of recipe which really needs cheese - something 'young' and tangy like feta. I was also rather unimpressed with the texture of cold corn pasta (I'd made a big batch for packed lunches). If I make this recipe again I will substitute wholewheat pasta twists. Roasted butter squash is, however, one of the most delicious things ever. So, even if you don't make this recipe, try adding it to salads. Well worth the (minimal) effort.

So, all in all, Candida Can be Fun! gets the thumbs up from me. Well worth the £20 cover price.

Buy it from Amazon here.

- or direct from Rebecca here.

In other news, would we all agree that The Cardboard Diet needs a make-over? Wordpress is beaconing...

New publication: Candida Can be Fun! (Rebecca Richardson)

Just received my copy of a new Candida recipe book, Candida Can be Fun!, written by Rebecca Richardson - a fellow Candida sufferer. I've only managed to have a quick flick through, but the recipes look great and very suited to my tastes, i.e. lots of Asian and one-pot kinds of meals. And best of all, she's a Brit! So, the ingredients are familiar and easy to source. I shall try out some of the recipes this week, and report back my findings as soon as possible. In the meantime, why not try out the free recipes on Rebecca's website?

Stewed!

A quick post about Stewed!

The whole range is a little pricey, but entirely sugar-free. Candida diet-friendly ready-meals (delicious ready-meals, I might add), just perfect for emergencies. Hurrah!

Cough, cough, cough

After coughing continuously for the last week and a half (Christmas was a total wash-out), I've given in: I'm taking Pholcodine. Which, of course, is full of sugar and alcohol. Frustrating, especially as I have managed to maintain the Candida diet all through the festive period, with not one slip-up. Not even a tiny piece of Turkish Delight has passed my lips. Still, what can you do in these circumstances? I cough all night, every night, not just keeping myself awake, but everyone else in the house too. I am exhausted and have managed to pull a muscle in my side. Feel like I've been beaten all about with a lump of two-by-four.

Pholcodine it is then. I'm trying my Mum's tip: 5ml dose in a cup of hot water, three times a day. Here's hoping it works. I do not want to end up how I was this time last year: steriods, two courses of antibiotics and a chest x-ray. For four months I coughed. FOUR flipping months - Christmas right through to Easter!

In better news - the anti-fungals (Nizoral) I was prescribed a few weeks ago seem to have done the trick, at least for now. Hallelujah.

Xylitol Recipes

I'm probably a bit late to the party here (the website looks pretty dated), but I've recently come across a list of recipes that make use of xylitol, including some 'candies and confection' (sweeties and cake?). I intend to have a go at the fudge recipe over Christmas, though I suspect it will turn out more 'truffley' than 'fudgey'.

Update

So.... the doctor prescribed me Canestan cream and a tablet. Like a good girl I took/used them. I dunno what happened, but they must have released all the dormant yeasty-beasties in my system from their slumber; I have ended up with probably the worst thrushy flare-up in years. Scuse me while I screeeeeeeeeeeeeaaaaaaaaaaaaaammmmmmmmmmmmm in frustration!

Anyway, back at the doctor's today, during an MOT of my lady bits, I explained the frankly piss-poor treatment I had received from the conventional medical profession in the past. She was really shocked, especially about me being told by a gynaecologist at a hospital which shall remain nameless that I was unlucky and would just have to deal with it (I swear I'd been marked down as 'neurotic'). She revealed that there are LOADS of other treatments to try (besides endless and useless Nystatin pessaries). For starters, she's put me on a course of a fairly heavy-duty anti-fungal treatment (taken orally). I start tomorrow. Here's hoping.

But, just because I have had to resort to medication, I don't intend to stop eating well. The Candida Diet is simply a healthy way to eat (providing it isn't taken to extremes), and I have renewed determination to get back on the straight and narrow, and keep it up.

Kicking thrushy butt

Long time, no hear (from me). I thought I had kicked thrushy butt, but recent events have conspired to reveal that, oh no, the Candida is still there wreaking its evil, yeasty ways in my nether regions.

So, while I'm waiting to find out what my surgery/local hospital indeed to do about it, I've returned to Angela Kilmartin's advice:

• avoid 'sweaty' clothing - though this does mean that I might have to give up running, which will be a real shame;
• tighten up the diet - not a lot, but, clearly, too much refined sugar has been passing my lips recently;
• shower, don't bath;
• three soup spoonfuls of yoghurt before every meal (yuck); and
• a tsp of olive oil per day (also yuck).

I should also get my hands on some caprylic acid tablets too. Oh joy.

The moral of this story is stay vigiliant against the thrushy battalions, cowered, but not beaten, ready to attack at the slightest opportunity.

Bastards.