Itch, scratch, repeat......

[Lucylou72]

Hi all.Hope you are as well as you can be.

I wasn't going to post this but if another person can relate it will help to know If this is common with others who have lupus and sjogrens or other auto immune related.I've had a really itchy vulva on one side and also in one armpit which has a sore. It's been going on for months and both areas are really sore with a itch scratch cycle going on. I went to see the gp finally and she mentioned she thinks it could be lichen sclerosus immune related.? I'd never heard of this. She's given me steroid cream and I'm going back in 2 weeks . Im still itching after a week on the cream!. My question is, does anyone else have this, what is the treatment long term and does this itch ever let up . Thank you for reading this far 🙏 x

[kingsnorth]

I have have the same problem and it’s driving me mad mine has been going on for over a year. To be fair l only saw the gp a few months ago because it does clear up for a while but then comes back. I was told it could possibly be contact dermatitis and given steroid cream which has helped a bit. It is so embarrassing at times when you have to scratch the itch. I will go back and see the gp as it hasn’t really cleared up. Please let me know how you get on.

[Lucylou72 in reply to kingsnorth]

Hi Kingsnorth, thank you for replying. It seems like there is a few of us with the same issue. It's an itch like never before isn't it. You could literally scratch non stop to no avail. Let me know too how you get on at the gp and I'll update aswell.

[kingsnorth in reply to Lucylou72]

I will keep you posted in the meantime l have joined an LS fb page and it’s really informative just for women and based in the UK

[Lucylou72 in reply to kingsnorth]

Very Good idea I don't have Facebook but would be worth me getting it for the support groups like that

[dg70]

I had exactly this I think. Had it for over a year. Itch could burn so much down below, I couldn't sleep and so painful and if you scratch too much it can get infected. The strongest steroid cream kept it under control but my rash also appeared under boobs too and started spreading down my inner thighs. I saw a dermatologist who has a vulva clinic and she said before taking biopsies, get the gp to swab dowb there. Came back candida ++, which is highly positive for thrush. The rash under my boobs was candida. Treated with thrush treatments and it went in days. The steroid creams only mask the itch but the cause is still there underneath. I have canestan pessaries every week for six months to keep it under control and anti fungal cream and I no longer have sex as that starts it off every time unfortunately. I would say go and get down below swabbed and see if anti fungal cream will clear your armpit as it cleared my under boob rash. If the GP had thought a year before to swab and rule in or out candida it would have saved so much pain and burning and itching so much I could not stand it and all that guessing as to what it is. Thank goodness I paid privately for the dermatologist. Of course yours could be something else but a swab will tell and its so easy just pop in to the nurse, you do it yourself behind a curtain and pass it back to her, takes seconds.

[Lucylou72 in reply to dg70]

Hi, thank you for taking the time to reply. Thrush can be so uncomfortable 😫it can make you feel like you are on fire, I know what you mean about sex. I've been single 5 years now and can't say I miss it especially at times like this. I tried canestan thrush cream at the start of all of this but had no relief or improvement. I also took the one off tablet. I will definitely mention about the swab when I go back though.

[dg70 in reply to Lucylou72]

Yes get a swab definitely gps just never mention it but it saves so much guess work. I'm on canestan every week for six months and antifungal cream every day. I don't need the steroid cream anymore. Dermovate steroid cream worked the best. There's also trimovate cream which has a mild antibiotic if you start to get infection. DONT SCRATCH, mine turned into a staphylococcus infection from scratching and it was some of the worst pain I've ever experienced. Vagisil cream and wipes are great as they have a mild anaesthetic which brings some relief. Lichen planus or lichen sclerosis are much like candida. Just overgrowth of bacteria, maybe harder to treat than candida. I have had lichen planus before. Just push that gp to swab you. Good luck.

[JMpurple]

Hi Lucylou72.

I was diagnosed with the same condition back in 2019 by a Dermatologist. My teenager has CNS Lupus and I am awaiting a rheumy appointment for myself as we share symptoms. I am aware it is an autoimmune response and strong steroid cream is the only treatment I've been offered thus far. The itch does let up after a couple of weeks max then it's a case of management afterward with other less potent creams. In my experience It's a bit of a cycle I'm afraid. Please know you're not alone and I'm really grateful you put this post out there. I hope your follow up appointment goes well. X

[Lucylou72 in reply to JMpurple]

Hi thank you jmpurple. It's early days with the cream yet I've only been on it a week so fingers crossed soon it will start to calm down . I've got a soap substitute aswell but I'm waiting for it the pharmacy didn't have it at the time. I hope you get your rheumatology appointment come through soon x

[CavendishCool]

Scratching and itching are just the normal for me with the Loopy together with the dry eyes, mouth and just recently a difference in the vulva, but not to where you currently are, so I'm really sorry that you've got this. However, I recently bought a vulva gel from a company called Wype which I can really recommend and it has just helped with the "?" whatever it is. It is very cooling and moisturising. I've been using their bottom wype too for quite a while now and that too is also very good. I'm a bit against all these intimate wipey things because I believe, sorry believed that my body knew what it was doing and left well alone because of all the ph stuff (not medical term), but the Wype products are a gel. So, anyhoo, just wanted to recommend maybe a sort of answer for when you've completed the doctor's cream which may leave you feeling "dry" when you've finished it. My psoriasis creams leave me dry and scarred usually. Hope you find a solution or relief from it soon. 🙏

[Lucylou72 in reply to CavendishCool]

Hi. I can relate to the dry eyes and mouth and now the vulva. I've been prescribed pesseries. It's like our body are going through a drought isn't it. Especially for those of us experiencing menopause symptoms on top of it all.I'm sorry you have it to. I'll definitely try wype, gel can be cooling and relieving too so it makes sense x

[CavendishCool in reply to Lucylou72]

Ahh thanks. Like my recent rheumatologist said quite indifferently, stop blaming the menopause, you're way past that! 🥴. I have to say I was very sceptical about the Wype gel, but have been very pleasantly surprised in a good way. I hope you get some positive results soon and feel less scratchy. 🙏

[Sylveste66]

Hiya LucyLou.I started off with an insane itch down below. It's awful isn't it? I used to wake myself up itching! It just makes it worse though!

I went to see my GP, she said it could be LS but wanted to be sure it wasn't anything more sinister so referred me to a gynaecologist. He agreed that it looked like LS but needed to do biopsies to confirm so the correct medication could be prescribed. The results confirmed what he and the GP thought. I was prescribed clobestol to use every day for 2 weeks then twice a week for a couple of weeks until it cleared up. Now I only use the cream when I feel it starting to flare. I've been managing it well for 6 years now.

Also a couple of years I started getting white shiney rash areas just under my nipple. They said its probably LS too so I apply clobestol cream when that flares up.

I was told not to use any scented products. I use Aqueous for washing down below.

I hope you get sorted xx

[Lucylou72 in reply to Sylveste66]

Hi sylveste66It's definitely an itch that needs tending to straight away isn't it. I try so hard not to now aswell because like you say it makes it worse. Soap and bubble bath is a no no isn't it. I'm just waiting on my soap substitute but you've reminded me that I could by aqueous cream in the meantime.xx

[Tiggywoos]

this sounds a bit bonkers but try not to wear black underwear . I remember dr price sjogrens specialist saying the dye used to make knickers black can be very irritating. I’m so glad you’ve had some great replies I knew you would but just thought I’d add this x

[Lucylou72]

Hi tiggywoosGlad you mentioned that, I'll try anything that might help so thank you. I've had some really helpful replies. I'm so grateful e all have this space to share and relate and feel properly understood xx

[Tiggywoos in reply to Lucylou72]

If you do wear black ones wear a little panty liner .. they do some fab really thin ones now you don’t even notice you’ve got it on xx