Lichen sclerosus / lichen planus experiences

[naturemumma]

Has anyone been diagnosed with this, or even misdiagnosed? What was your treatment and has it gone away? Sorry for the long post!

I went to see a gynae this week - have had quite a bit of itching down below. Not hugely intense, but a bit irritating. I had a look and saw what I thought was angiokeratomas fordyce spots and the skin looked a little paler than usual - not hugely, quite subtle. I didn't think too much of it because my lips (on my face!) are the same and I've lost a fair bit of pigment on / around my lips with a small amount of vitiglio.

Anyway, I have always had a little bit of itching in that area and I think am sometimes a bit rough when I have a wash to ease it a bit, although I know that it usually makes it feel worse. Sorry for TMI. I actually thought it was more like dermatitis as I've always been pretty sensitive in that area with anything scented etc.

When I went to the gynae he said it was lichen planus, but really doesn't look like it from what I've seen online, and a small patch of lichen sclerosus. He said that overall it looks generally healthy down there. He's prescribed me with dermovate for two weeks (once a night) and then two weeks (every other night) and then two weeks with nothing. Then I have to go back. He said that if it works then I wouldn't need to carry on with the steroid.

From what I've read it looks like there should be a maintenance dose each week, but he said not. I'm now wondering if the diagnosis is correct. Is it possible to be wrong? I don't know if I've caused it by itching a bit too much. But I'm also nervous about not continuing with a maintenance dose, as I don't want to increase my risk of vulval cancer (any more than it does by having it anyway)

Any experiences / thoughts / misdiagnoses? TIA!

I’m so sorry you’re going through this. I think biopsies are often to rule things out rather than in, if that makes sense. It’s also used to diagnose lichen sclerosus so that might be what the Dr is thinking. I saw my gynaecologist the other day and he said that worrying changes to look for would be areas of ulceration that bleed. Or a huge increase in symptoms that the steroid doesn’t help with. If the steroid is helping then I would think that’s really good news. I’m glad you’ve been referred as it’s best to get the advice of a dermatologist, especially if it is lichen sclerosus. Hope it goes well at the appointment and you don’t have long to wait. I really understand how you feel because I get hugely anxious about health.

I didn’t have a biopsy so can’t comment much on that, but have had a mole removed recently and that was completely painless.

I got both in menopause, in fact it was my most irritating menopausal thing! It did go away after about 3 years but I was non stop scratch for those 3 years plus some bulldozer type cream from Australia! (Can't remember its name but smelt like coal tar' )

That’s what I’m trying to tell myself! It’s more to check that it is lichen sclerosis rather than the worst thing. Luckily I don’t have an ulcer or anything down there. I have made myself bleed before from itching but I think that’s down to the skin being so thin down there but they have always healed very well and never turned nasty. And I don’t think there’s been any change. I do thankfully have a drs appointment in 5 weeks just for her to check it hasn’t gotten worse and see how the creams working. She put me on a mild one just to make sure they can check from the biopsy to confirm it is lichen sclerosis. I just hope the wait for the dermatologist isn’t long just so I can have that peace of mind. Thank you. I’ll keep you updated. I’m awful with health anxiety, iv just gotten over constant anxiety and panic attacks & have stopped therapy for that and now iv been hit with this so trying to stay calm.
me hen you had the mole removed I’m guessing you had injections down there? I’m terrified 😂 and iv had 3 kids so I’m sure it can’t hurt as much as that 😬. I have turned into such a wimp since becoming a mum 🫠

The mole was on my arm, so no experience of that. But I couldn't feel a thing and the injection wasn't hugely painful.

I completely understand how it feels with the health anxiety - I've felt a bit of a mess with it too lately.

I really hope you get seen really soon :)

I was diagnosed with LS by a gynaecologist and have the same treatment plan as you do. It clears it well and I managed it for years with very little flare ups. I regiment using an ointment like zeroderm daily to keep on top of it if you've not been told to do maintenance dose of steroids (I don't do this)

Thanks @Bookloverlover! I’m so pleased to hear a positive experience. When you say you don’t do this - is that a maintenance dose? Were you told to do a maintenance dose by your gynae or as and when? I’ve been using something similar to zeroderm and I think it makes such a difference. At the moment you wouldn’t really know there was anything wrong.

Nope I don't Maintenance dose... just start the regime again when I have a flare up. Keep up with the zeroderm or similar and hopefully your flare ups will be few and far between. I was diagnosed at 23. 30 now and currently having my first flare up in 2 years so it's possible to manage it well xx

@Rosieposie93 Don't worry about the biopsy. They put a numbing cream on before the local injection. Then it's done, a stitch is put in and that's it. I thought the stitch would be uncomfortable, but it really wasn't. Knowing, one way or the other is, however, just the start

Ah fab! Thank you for letting me know! Nothing to worry about then. Iv received an appointment for October so surly that must mean they don’t think it’s the worst thing? Xx

@Rosieposie93 Just a heads up..... it's the scratching that is the problem. So what I use to reduce that is wipe with warm water into which you have dissolved baking soda, then smear with a cream containing Lidocaine (Piles cream or Vagisil). That is my go to every time. Wiping with a warm damp slightly rough flannel is also good!

@Rosieposie93 Remember Rosie that the biopsy is most likely to confirm the diagnosis of LS rather that the presence of anything more sinister.

Thanks @Bookloverlover I’m really pleased you’ve been able to manage it well.

@Rosieposie93 I’d be tempted to call and see if it’s possible for them to let you know if there are any cancellations. That’s a long time to wait without treatment if it is LS. The steroids work so well for most people and it seems a shame not to have full relief until then. I find using an emollient ointment really helpful. It made a huge difference to me before even starting on the steroids. I can’t use anything perfumed and have to be pretty careful - I think I’ve always had a bit of dermatitis too - so it’s always worth seeing if there’s anything in particular that sets it off. All the best!

@naturemumma I think if there’s any cancellations they usually contact you. That’s what the JRs always done with any appointments. But Warwick could be different. I will see my dr again in 5 weeks for a check up down there so I’ll ask her. So I have been told to use an ointment for washing and if I get itchy called Epaderm & the steroid cream is called Mometasone Furoate. I just hope they both keep helping until they know it’s 100% lichen and then hopefully they put me on something stronger? Thankfully I haven’t itched down there for 2 weeks now 😂 it’s bloody amazing! I’m also the same with perfumed things, they also give me water infections. I wear unscented panty liners every day too so it’s not directly touching my underwear that probably have clothes conditioner and all that still on there somewhere 🤦🏼‍♀️ I’m so glad iv been able to talk to other women about this as no one I know has had it or even heard of it! I was so embarrassed before but I now openly talk because I think it’s something women should know about and to not be embarrassed to go to the dr about a constant itch or change down there. Thank you 🥰