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Original poster

Lichen sclerosus please help

28 replies

fatoneatthegym · 23/12/2018 20:07

I've had it for a few years now but it's never been too bad. I get maybe 2-4 little flareups per year, so I just use the ointment for a few days and then it goes away.

But now I've been having a flareup for what feels like several weeks and it just won't go away. I'm using the ointment but the area keeps stinging and I don't know what to do. Is there anything that can be done? I'm away at the moment so I can't see my GP for a couple of weeks, but I do have the ointment with me.

Please tell me this could get better. I've been going through a period of stress which I'm sure doesn't help either, but the situation is making me feel worried and I don't feel very happy right now.

OP posts:

FabulouslyGlamorousFerret · 23/12/2018 20:10

Have you changed your washing powder? Soap? Try to eliminate anything that's changed and try not to get too down about it. It WILL settle down, go and see whoever deals with it when you get home.

I would use the cream twice a day until you get back.

Good luck

Blankiefan · 23/12/2018 20:12

Dont spare with the steroid cream. Which one are you using? I started with trimavate but get on much better with Dermovate now.

Original poster

fatoneatthegym · 23/12/2018 20:17

Dermovate is the one I have. When you say don't spare, do you mean use a generous amount and don't be sparing with it? Sorry I'm quite stressed atm.

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FilledSoda · 23/12/2018 20:23

Dermovate never worked for me the only thing that worked was vagifem then hrt.
It was all hormone related for me but I had symptoms from my 30s.
I still don't understand it.

FabulouslyGlamorousFerret · 23/12/2018 20:26

Which is the 'ultra' potent one? That's the only one that works for me dermovate, I just googled

Original poster

fatoneatthegym · 23/12/2018 20:29

It's the one I'm already using. So now I'm worried

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Original poster

fatoneatthegym · 23/12/2018 20:31

Can it actually be made worse by stress? I've had a lot going on recently and it's making it hard to stay calm.

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FilledSoda · 23/12/2018 21:00

For me it wasn't stress related.
It's tempting to think it is because it's so stressful, once you get the right meds you'll look back and realise it was completely unrelated to your state of mind .

Blankiefan · 23/12/2018 21:07

Yes. Use lots of Dermovate.

Have you been using any sanitary towels or pads recently? My hoo hoo goes crazy when I do.

FabulouslyGlamorousFerret · 27/12/2018 21:37

How are you now @fatoneatthegym ?

AuntieO · 27/12/2018 22:54

Ask GP for lotriderm and timodine cream and apply them one after the other twice a day. Worked very well for one of my patients after nothing else did. Good luck, it must be awful

Original poster

fatoneatthegym · 01/01/2019 12:57

The lumpy bits in the sides of my vulva have calmed down, but now the sore patch seems to have moved upwards, as in further inside towards my vagina, which makes it harder to put the ointment on properly. It seems to be constantly stinging, especially when I put the actual ointment on, as if the skin doesn't like the feel of my finger. I used to apply it with a tissue but that was even worse, it's better to use my finger and then wash my hands carefully afterwards.

But surely it can't be good to be using the Dermovate for so many weeks. I thought it was for short term use.

I have a GP appointment on Monday but I don't really know if she'll be able to do anything.

It was originally diagnosed by a female dermatologist who I paid for a one-off consultation. I've never actually seen a gynaecologist about it.

I used to consider myself as someone who just had a mild case, but now I'm getting worried it won't go away.

OP posts:

Original poster

fatoneatthegym · 01/01/2019 13:00

I have to take a flight home tomorrow and I hope I'll be able to get comfortable. I'm worried that sitting for ages could be uncomfortable, then I have to go back to work the next day and sit at my desk. It's really stinging at the moment.

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Troels · 01/01/2019 13:08

You poor thing, having to fly and sit so long with it.
Loose trousers if you have them and fidget about in your seat to try and ease the pain.
I've started making stuff to put on mine. I still have dermovate, but rarely use it if II can help it.
I use a 50/50 mix of coconut oil and pure shea butter (bought on amazon), melted and blended together with a bit of olive oil (to stop it going too hard in cold weather. I get a bit about the size of two peas and it melts onto the vulva, and seems to help stop me splitting. I use it anywhere from twice a week to daily.

Original poster

fatoneatthegym · 01/01/2019 14:47

Is it safe to do exercise when I'm in this state? Things like pilates or yoga. I don't go running or anything like that.

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Fleabag123 · 01/01/2019 14:51

But surely it can't be good to be using the Dermovate for so many weeks. I thought it was for short term use.

It is safe and often necessary to use long term. People often relapse from stopping their steroids prematurely or using too sparingly.

Could it be something else causing soreness - so you have any symptoms of thrush?

Fleabag123 · 01/01/2019 14:52

And yes it’s safe to do Pilates

Original poster

fatoneatthegym · 01/01/2019 15:04

I wondered about thrush but I really don't think it is.

Is it safe to put the ointment on the area around my urethra and round the front? It's burning there but I don't want to give myself a UTI. At first I thought I actually had a UTI but I really don't. My pee is totally normal.

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Troels · 01/01/2019 17:18

I put it round the front, no problem. Feel better soon.

FabulouslyGlamorousFerret · 01/01/2019 19:18

I put it all over when needed too, around my clitoris and urethra and it's not seemed to negatively affect it

Original poster

fatoneatthegym · 01/01/2019 20:12

Thanks. It's making me really unhappy.

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Original poster

fatoneatthegym · 02/01/2019 15:54

@Fleabag123 Would it be worth me buying a thrush treatment from a pharmacy? It's burning a lot now. Is it possible to have LS symptoms at the same time as thrush? Maybe it could be a bit of both?

My GP appointment isn't until Monday. I'm going back to work tomorrow and do a job where I sit down at a desk for most of the day. I've noticed over the holidays that I feel a bit relieved by lying around and overnight when I'm not wearing underwear. It's back to the old routine tomorrow and I'm worried it'll make it worse.

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Aquamarine1029 · 02/01/2019 16:46

Light therapy can work wonders.

london1971 · 02/01/2019 17:07

It was steroids that was making mine worse. Just kept rebounding after course of steroid. Stopped all steroid and it eventually went. I got addicted to the steroid so watch out for that. Got Red Skin Syndrome. It's an area that absorbs steroid so easily into the body. Doc told me they shouldn't be used long term, steroid cream slowed down my adrenal function and I had adrenal fatigue. Do be v v careful with steroid use. Steroid addiction is a thing whether many believe or not, I lived it.

Original poster

fatoneatthegym · 02/01/2019 20:49

@london1971 After you stopped using the ointment, how long did it take for the LS to go away? I am worried about addiction and also my mental health as I'm in a bit of a state at the moment. Will I need to take time off work? What shall I do?

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