With this condition you learn to count your blessings

G reat. You’re approaching puberty, your emotions are all over the place and you’re in the peak time of your life for embarrassment about your changing body. Then your fouflah starts to itch like crazy and you scratch so much that you bleed.

That’s how it began for me. Well, I definitely wasn’t telling my mum for fear that she’d jump to the conclusion that I’d had sex and caught something nasty. Especially given that I’d had sex and was scared I’d caught something nasty.

I wasn’t keen on going to a doctor either. It’s strange how as teenagers we think we’re grown up enough to have sex, but we revert to childish embarrassment when it comes to showing the same body parts to healthcare professionals. Maybe it something to do with feeling guilty about doing it and being caught out. Also, we are powered by our hormones to go and investigate what sex is all about, but those hormones don’t supply the same courage.

Anyway, like most teenagers I assumed I had thrush because that’s pretty much the only vaginal condition you’ve heard of at that stage. And everyone thinks if it itches, it must be thrush, right?

WRONG.

And buying thrush treatment (online obviously, too embarrassed to get it in a pharmacy in case they asked me questions) was a BIG MISTAKE. If I was itchy before, I was now itchy and in agony. I tried to wash it off and that didn’t help at all. I now know that perfumed soaps irritate my vulva.

Over a few days, it seemed to settle down so I decided everything was OK – except I wasn’t in a rush to have sex again.

I kind of got used to itching even when sometimes it made me bleed, I suppose I just talked myself into believing that it was normal.

Fast forward a year or so, and I thought I wanted to have sex again. I say ‘I thought’ because it turned out I didn’t – it REALLY hurt, and afterwards there was burning inside as well as the itching and soreness outside.

I used a mirror to check it out – it hadn’t occurred to me to do that before, but I guess I was more mature and more used to periods and so on. What I saw was that I had to see a doctor.

There were white patches and tiny slashes on my vulva, which were bleeding and which stung like hell when I went to the loo. I was pretty damn scary.

I went to a big sexual health clinic rather than my GP, and luckily they diagnosed Lichen Sclerosus easily. I don’t think the average GP sees it often.

Because I hadn’t done anything about it, the entrance to my vagina had become smaller which was one reason for the pain of sex. The other reason was that LS makes my vulva super fragile so the skin splits open easily.

I’ve learned to be really kind, gentle and loving to my vulva since I found out that it’s so delicate. Steroid ointment got the symptoms under control – what sweet relief that was, after so long. It took a few months. My doctor said not to worry about the skin thinning effect of steroids because they were treating a condition that causes thickening of the skin – that’s the white patches.

It hadn’t occurred to me to worry about that, so I worried about it for a while until the itching eased, then I decided to take my doctor’s advice and get comfortable with it.

I had a few flare ups over the years, which made me more careful about everything I used in the shower, and sex-averse. Some may say that’s a good thing in this permissive age…that’s how I choose to interpret it. A lot of my friends have wild one-night stands without thinking twice about it, while I’d have to get really close to someone before I’d even consider a bedroom encounter because it would require a lot of trust.

I’d have to explain the situation and be sure that they’d be gentle, stop if I said so, and not think I was a freak. Also, LS is not infectious – but try telling that to someone who sees it for the first time. The itchiness comes from white, raised patches, doesn’t look disgusting but it’s definitely something you’d question.

Suffice to say sex didn’t happen often, but you know, it made me discerning and it didn’t stop me meeting the man of my dreams. Maybe it helped me to do so.

We do have sex, carefully. Possibly not as passionately as someone who hasn’t got LS, but then plenty of people who have passionate sex don’t have the love and care that I enjoy. I feel treasured.

We’ve had problems, and I’ve had times when I’ve been really down in the dumps because it’s been too painful to walk the dog let alone consider making love. No one knows what causes LS, so it’s not going to be cured any time soon. But I found a brilliant blog (mintgreenliving.com) which has good advice about how to improve your sex life with LS. It’s simple but you don’t necessarily get that approach from medics.

Partner support is crucial, and so is a lubricant as well as a vaginal moisturiser which doesn’t irritate my fragile fouflah. Different positions can reduce the risk of issues, and an ice pack afterwards if you need first aid is essential.

She also finds dilators invaluable, but I’m not a fan. The entrance to the vagina can become almost sealed up, but I’m not too bad. I found a soft pebble-shaped device (pleasuresolutions.co.uk) which just sits on the vulva at the entrance to the vagina (you’ll notice how much more comfortable I’ve become with my anatomy since I was a teenager) and creates a pleasant vibration. No friction, you see. Rubbing or stroking especially without lubricant can be painful and even make the skin split. If there are skin splits, there’s a risk that they heal up against each other, or adhere to other areas of the skin, and that can require surgery, which I really want to avoid.

I wouldn’t dream of using a perfumed soap or shower gel and I wash my hair over the sink rather than in the shower, just in case. I use a barrier cream to prevent urine stinging – I decided against Vaseline when I saw a warning that paraffin based products come with a risk of fire if they get on your clothes and you go near a naked flame. Imagine! It’s on your knickers and your fouflah catches fire! I use Multi-Mam Balm. It’s meant for nipples of breastfeeding mums, I borrowed some from my sister because it’s a natural product and it does the job nicely.

I don’t know what will happen if we decide to have babies, I dread to think of the damage that would cause coming out. I’ve just decided not to worry about that too much, and if it happens, maybe a C-section will be the answer.

I’ve also decided not to worry about the risk of cancer. A small number of LS patients develop it, but then there are numerous other reasons why people get cancer including smoking, drinking and eating the wrong foods, so why waste energy thinking it’s any more likely than that? Anyway, I’m now familiar with every millimetre of my fouflah, I’m forever checking out how it’s looking down there, so I’m sure I’d notice if there was any cause for concern.

What I’d say to every woman – and every teenage girl – is to get to know yourself really well down there. When you know your body really well, you can spot signs of anything going wrong early, and it’s always better to get these things sorted quickly.

All things considered, I’m lucky. Maybe I’d have been a wild child without LS, maybe I wouldn’t have known I’d met Mr Right because I wouldn’t have taken time to know I could trust him, and maybe I wouldn’t take such good care of my health generally. When you have something like this, you learn to count your blessings.