While my previous posts for Pelvic Health Awareness Month have been interviews with women living with interstitial cystitis and chronic pelvic pain conditions, this post focuses on how I am living with lichen sclerosus. It's a little tricky to interview yourself(!), but I hope this post has some helpful information for those new to a diagnosis of lichen sclerosus or who suspect they have the condition to discuss with their doctors.
This post is for informational use only, and does not constitute medical advice in any way. It is simply my story, the recommendations of my doctor for my specific circumstances, and how I manage living with lichen sclerosus.
Is it an 'embarrassing' condition?
I'll admit that I went back and forth about whether to write this post or not. Despite having a 'chronic illness' Instagram account where I pretty much talk about everything I experience with my health, this was the one condition that I kept quiet. It felt a bit too private somehow, and for a long time, when I was first diagnosed, I did feel a bit of embarrassment over it.
Well I'm taking the plunge as it is Pelvic Health Awareness Month and, as we know, so-called 'embarrassing' conditions are only embarrassing if we continue to label them so. There is, of course, no such thing as an embarrassing body or one that we should feel any shame over.
So no, lichen sclerosus is not an embarrassing condition. It is just a condition, like many others, and one that many of us live with. The more we talk about it, the less taboo there will be (hopefully!).
What is lichen sclerosus?
Lichen sclerosus is a chronic inflammatory skin condition, which can affect any part of the skin, but most commonly affects the genital skin (British Skin Foundation). The cause is unknown, but some doctors suspect that it is when the body's immune system attacks healthy tissues and so is an autoimmune condition.
In terms of symptoms, lichen sclerosus causes white patches of skin that can look shiny and that can either be thinner or sometimes thicker and raised. The skin is fragile and easily damaged which can lead to tears and cracks, and then scar tissue to form. It can also be itchy for some people (NHS; British Skin Foundation).
Tests and diagnosis
I can't remember exactly how I came to be tested for lichen sclerosus, which I know may seem odd. It was during a time of dozens of medical appointments, tests and treatments for other conditions. Perhaps wrongly, this one didn't feel that important and, to begin with, I thought a skin condition wasn't that concerning given everything else I was dealing with.
I do remember how it was confirmed through - a skin biopsy of my vulva. Yes, it wasn't exactly a unpleasant experience. I can still remember sitting nervously in the waiting room beforehand. The local anaesthetic injection was the worst bit (I didn't feel anything after that). The doctor said I would feel as though I was getting stung by a bee. Well, as I said to her, that was one angry bee . . .
Saying that, the area healed really quickly and it was definitely worth it to have a confirmed diagnosis which led to treatment. I was diagnosed both with LS and lichen planus.
Hormonal fluctuations and symptoms
Symptoms can flare up and down a great deal. On good days, weeks even, I can forget that I have the condition altogether. I don't have any symptoms or they are so minor that I barely notice them.
One thing I wish I had done from the beginning was keep a symptom diary. It wasn't for a year or so that I realised hormonal fluctuations were playing a major role in the increase of pain and tearing. I can now pretty much tell you to the day when this will happen as it coincides with the end or just after my period. My dermatologist thinks this is because our skin is more dry at that time.
To try and keep things as happy as they can be, I'm more diligent about using moisturisers at that time, and it does seem to help. If the flare continues for more than a fortnight, then I use a steroid cream to calm everything down. Of course, follow the advice of your doctor.
Lichen sclerosus treatment at home
Treatment for lichen sclerosus usually centres around the use of a steroid cream. I would recommend seeing a dermatologist or gynaecologist, and one who has the condition or vulval disease as their specialism. I saw a few too many who didn't, and wasn't happy with their treatment plans.
Aside from steroid cream, I am advised to use a 'balmy ointment' as my doctor calls it or petroleum jelly such as Vaseline. Something thick and greasy, that is really moisturising. Am I the best at remembering to do this? Nope. But I'm trying! I use it at night for, I think, obvious reasons . . .
During the day, I use a less greasy moisturiser if my symptoms are flaring, usually the Aveeno skin relief intense moisture repair cream or Yes Yes Yes lubricant (recommended by my doctor, and yep, it's lube . . . ). I also use a body wash for sensitive skin such as the Aveeno skin-relief fragrance free one. And cotton or silk underwear, always! Anything else can exacerbate symptoms.
Surgery for lichen sclerosus
One other treatment option, in some hospitals, is to have surgery. I am currently on the waiting list for a fat transfer surgery, where they take fat from the stomach and syringe it into the area. It's a new procedure that is being spearheaded by my doctor and a few others, and has had promising results so far.
About six months ago I went for a run, and did a slightly awkward diagonal step up onto a kerb. Yes, you may be able to guess what happened next. Skin tear. I've also torn when stepping out the way of my cat when he is flying about on one of his 'zoomie' moments, and when running upstairs two steps at a time to take an important phone call.
So being careful is the name of the game. I've come to learn that sudden movements can cause problems, but then they can happen for no reason at all as well.
I think the main aspect of living with lichen sclerosus that is more difficult is that it is so unknown. Before I was diagnosed I hadn't ever heard of it and as with many things involving 'down below' as one of my doctors phrases it, there's a degree of taboo surrounding it.
I've read that it is contagious (absolutely not true) and one person wrote that it could be down to poor personal hygiene (again, absolutely not true).
I hope this post goes a little way to raising awareness, and perhaps dispelling a few myths too. Most of all, if you find this page because you have the condition, then please know that you aren't alone. There are many women (and men) with the condition and perhaps reaching out to others (anonymously if you prefer) with it on social media could be so helpful in finding support.
Don't forget to check out the other posts as part of this series for Pelvic Health Awareness Month:
Pin to your health boards!