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.
Jump to:
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 as yet unknown.
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 (Mayo Clinic). 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 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.
Daily life
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 my interview with Zoe on living with interstitial cystitis and the positive benefits of a suprapubic catheter too!
I'm active on Instagram, Facebook and Twitter if you would like to follow along for more posts like these!
Lori says
I am so glad you wrote about your journey. I too was diagnosed and have been battling treatment. Some days are good and others not so.. I also have been dealing with the external symptoms which have included multiple cortisone injections into the affected areas. Pretty painful but seeing some positive results. Each day is a new challenge for sure.
Claire says
Hi Lori, thank you for sharing your experience, and I'm glad to hear that you are seeing some positive results from the treatment. It's not one I've had before, so I'm happy to hear that it can bring some relief for those of us with the condition.
Laura JM Hanson says
Sometimes larger clinics have gynecologists that work with dermatologists together. When I was seen at that clinic (Mayo clinic in the US) I finally got good treatment. Totally agree that it isn't caused by poor hygiene but I have found mine flares if I'm not being diligent with my hygiene.
Claire says
I'm glad that you are having good treatment, it's so important isn't it.
Ann says
Hi Laura, I was diagnosed with Lichen Sclerosis a month ago. I have no idea what treatments are available for this condition. I am wondering if you wouldn’t mind sharing which treatment you were referring to that helped you? Thank you
Claire says
Hi Ann, I would suggest to ask for a referral to a specialist who can help you with LS. It is typically to be on treatment, so you need a doctor to help guide you on which is most suitable for you. All the best with it, Claire
Andrea says
I was first alerted to a name for my symptoms in 2016, while pregnant with my second child. The midwife was doing a confirmation of pregnancy or pelvic exam, and she asked me about it. She called it as soon as she saw it (white patches) and I had never heard of it before. I told her that I thought it was vitiligo, as that runs in my family. Getting a name for it was eye opening and made so many past issues make more sense. I had experienced lots of itching and irritation, thinking that I had yeast infections, but never got diagnosed with yeast infections. Then, randomly, on my wedding night, I had really bad pain during intercourse. It was weird and I had issues with dryness, still do. Thankfully, I no longer have pain, but now I'm experiencing post coital bleeding after intercourse (as of 2018). We are still trying to do tests to figure out the cause for that; we ruled out cancer and any other infections. It took until last year when I finally got a biopsy for an official diagnosis and treatment plan of steroid cream. I'm not the most consistent with it. I believe mine is mild, but I pray that it doesn't get any worse, and I pray my baby girl doesn't end up with it.
Claire says
It can often take a long time for lichen sclerosus to be diagnosed can't it, yet it is so vital so we can access treatment. I hope that you get to the bottom of the other pelvic issue you describe.
Julie says
Just got diagnosed with it yesterday, I’m devastated! The risk of getting cancer now is so much higher! I already have Fibromyalgia, nerve root pain and arthritis now this! I’ve never heard of it before! 😱😥
throughthefibrofog says
I'm sorry you have just been diagnosed. My doctor said that with proper management the risk isn't that high - but you need to self-check and have a doctor check regularly. I hope your doctor is supportive.
Phyllis says
I was just diagnosed - never heard of this condition before. I am one of the lucky ones - no symptoms at all. My OB/GYN prescribed a steroid cream for me to use twice a week. Thank you for this informative article.
throughthefibrofog says
I hadn't heard of it before I was diagnosed either, I think it's very under-recognised isn't it. So glad you are getting treatment, and thank you for taking the time to be in touch!
Emma says
Thanks for sharing your story. I was also diagnosed with LS 9 years ago but since then I don't have any problems with it ( except the look/ appearance of my vulva and that is another story). I still don't have right doctor for it... my gynecologist is doing the follow up. Can you share with me the name with your doctor please? Thanks and good luck with the surgery
Please keep us updated
throughthefibrofog says
Hi Emma, thanks for being in touch. I would recommend seeing a dermatologist who specialises in the condition (which can be difficult to find I know). I'm in the UK so I see a doctor here in London. Thank you for the well wishes, Claire
Sheryl says
This sounds like such a painful condition. And I hate it when my chronic illness shows up visibly especially and makes me look 'less feminine' or 'ugly'. It just feels demoralising and embarrassing, like you mentioned.
throughthefibrofog says
It's definitely strange to have a condition in an intimate area, to say the least. I'm thankful mine is on the mild side but it could progress in the future. It's one of those 'wait and see' conditions . . .
Katie Clark says
Thank you for sharing this, Cynthia. I had not heard of this. You push through one thing at a time. You are a strong woman.
throughthefibrofog says
Thanks Katie, that's kind of you to say! I'm Claire, think there may have been a name mix-up!
Cynthia Covert says
Before your mention of it, I had never heard of this. Thank you for sharing your experience. That and the information you provided will surely help some woman who thinks she is alone in her suffering. Hugs!!
throughthefibrofog says
Thanks Cynthia! So many people haven't ever heard of it, so hopefully it will be helpful to others who are new to a diagnosis.
Veronica says
Thanks for the hugs! I Don’t wish this post to be regarded as negative. It isn’t intended to be. I am in my 80s and have had lichen schlerosis on and off since I had my children in my twenties. It is flaring at the moment again.
Unfortunately I am allergic to the usual prescribed creams and ointments, so I tend to use Yes moisturiser each time I use the loo if it flares and sit in a warm bath rather than shower. However, I happened to see my doctor on another issue recently, and mentioned this, and she has prescribed Diazepan Tablets. I have just been taking one at bedtime so far, and have been able to sleep better. I think one has to work out what is good for you. Best wishes.
Shruti Chopra says
I recently heard of this condition and now I'm noticing it in quite a few people I'm coming across but so far no one's mentioned the surgical procedure but like you said it's experimental and headed by your doctor - good luck with that, I hope it works out nicely for you - suffering is no fun at all. And thank you for speaking about this - I can understand how you must've thought over it many times. Thank you for sharing.
throughthefibrofog says
Hi Shruti, I hope it becomes more widely known as I think some women may suffer in silence with it, and not access treatment. The surgery is fairly new, and I'm just lucky to be at one of the hospitals that is pioneering it. Hope the post helps women who are new to the diagnosis.
Chris says
i have struggled with it for 16 years. sometimes it is extremely painful and debilitating. when it's a mild case or in remission I am very thankful. I pray research is finding some better managing tools. Even more praying for a cure.
Holly says
I had not heard of this before. Even though it may seem embarrassing it a good way for others to learn! Thank you for sharing your journey
throughthefibrofog says
I think it's a fairly unknown condition - I know I hadn't heard of it until I was diagnosed with it!