hi I was diagnosed only two weeks ago in the uk. i was told by my gp to put strong steroid cream on my bits and my bum and to go back in two weeks. i went back on friday and was given stuff to book an appappointment with a vulva dermatologist. I was told to keep up with once a day application of the steroid cream in the meantime. I have managed to book an appointment but not until the beginning of March! Should I still be using the strong cream daily until then? If my condition improves surely I don't need to apply daily? My bum is sore already. Any uk sufferers out there? Berkshire area would love to meet up and discuss and compare?
Hi is the steroid cream working? I had hydrocortisone worked the first time then the next time it made me worse. Am booked in with bulval clinic in January . March seems a long time to wait can't you get in any sooner?
Hey, I've had LS for 3 years now with my diagnosis 2 years ago. I'm 34. I use the strong cortisone (clobetasol in canada) a few times a week. Some weeks are better than others but some are worse & those weeks I'm applying it more often. I would stick with what your GP says & once you have your appointment with the vulvar dermatologist go back often so they can notice changes to the arcitecture of the vulva. You'll likely have to use strong steroids for the rest of your life 1+ times a week. Sorry. It's a terrible condition, I can't lie.
Hi Janet, A good place to start is the post, New to Ls - start here. It is a pinned post at the beginning of all threads. In that post you will find a link to a Webinair that you will find very interesting and informative. It is a speach by a specialist that will describe the condition and the best treatment for you. It lasts an hour but it will be worth spending so you know what you are dealing with. So sorry you have joined our club. Not a club I would recommend.
WHILE WAITING, if you wish to be more self reliant, what works for me is to:
view postings of others and educate yourself as much as possible and see which of the 'routines' other have been successful in managing their conditions i.e.
reducing/eliminating sugar from your diet and increasing more organic, alkaline foods among many. After you gain a little more perspective, essentially, what it boils down to is orchestrating one's life and make the necessary changes as is possible. By the time you get to meet with the next professional, you will be equipped to have a more meaningful conversation, coming from a place of being informed. Finding a solution becomes a joint effort. PLUS, if you gain some useful insight and share with us, all of us also benefit.
Hope this helps and wishing you a joyful holiday season.
Hi Janet, I am in the uk but in Newcastle. Been suffering LS for a lot of years! Would recommend you use the steroid ointment daily for a couple of weeks, if things improve start using it twice weekly until your appointment. My dermatologist advised this, whenever I get a flare up I use it every day then back to twice weekly. I have recently been prescribed Dermovate with an anti fungal additive as I have been having problems around my bum, it seems to work better in that area that straight forward Dermovate. Get an emollient to wash with something like Hydromol and moisturise regularly with emu oil or coconut oil. It all helps and this forum is a great place for info.
I can't see my bits and my bum so can't decide if they are good or bad! The itching has stopped but as said bum cheeks now a bit sore is this because of strong steroid cream ? My vulva definitely changed even doc noticed. Does this mean I have got badly progressive ls?
Hi Janet. I've been using steroid since 2009 regularly and managed to go from twice a day down to every second day. The important thing is to get LS under control first. The lovely ladies on this site have recommended bi carb diluted with water either spray between bathroom stops or bath. I have been going pretty good with this. I use Sudacrem on my bum when it gets red and inflamed. Hope this helps
Hi, sorry you had to join us.
I'm English but I'm not living in the UK.
What are your symptoms like, have you any fusion? Is your undercarriage patchy and white? I ask this because I don't think you need to be putting it on everyday until MARCH! I personally think that is too much. Everyone is different though, in your shoes I would apply it every day to start with, maybe for a couple of weeks, then every other day, and finally twice a week...this is only my opinion, and I am sure others may have a different view, and of course it all depends on the severity of your Lichen Schlerosus.
Hi thanks for your reply. I can't see but apparently I have White patches on bum and bits. Husband has been applying cream to the bum and I have been doing my bits. Doctor confirmed my vulva fusing at the top near my clitoris. I agree daily application until March excessive. I'm gonna cut down to every other day for now. Itching has stopped but now a bit sore on bum and weeing ! Is that due to too much cream ,
Thanks will try sudacrem ! Have lots from bringing up kids !
Try soaking with bicarb 1/3 cup in a full bath or a pinch in a sitzbath or spray bottle. Helps calm things down. Use the cream daily until the soreness calms down then reduce to every other day. After a few weeks of that try to reduce to twice a week and then once a week. In between and after every pee moisturise the area well. I use Epaderm others use Hydramol, coconut oil and other types of suitable moisturiser with no perfume. Whatever you find suits you best. If you are sore then you need to treat. The dermovate is important to help prevent further fusing. Don't be afraid to use it. Watch the hour long webinair link on the New to Ls - start here post. It really will help you understand and control your condition as best you can. Good luck
Hi I have had ls for a year now had a biopsy to confirm ,and used the cream as I was told to ,all clear now,but if I gave a flare up I have to start again with the treatment.i live in the south.
Does the dermovate stop the diease progressing or does it just stop the symptoms? Does applying the cream actually stop things or just stop the symptoms?
South of England ? X
If you are in reasonable drive time would love to meet up . I am near reading. I would love to set up a uk awareness group.vwho heard of this before we were diagnosed ?
Yes I am just like you,I used the cream like you everything is ok now,Iwas told if I have any problems just restart again,I have had LS for a year now and yes things have fused together a little but consultant is not consurned at this time.hope you get on ok
To far for me,don't know the area at all thanks
Hi, The dermovate helps to heal things and to thin the very thick skin that drys and cracks causing all the problems. I think it is the dry skin that looks white and shiny (pearlised). Moisturising definately helps with keeping things calm and to help stop the fusing which is caused by two areas that are raw sticking together and then while healing they stick together. That is as simple as I can describe it as I understand the condition.
Hi Janet
I am under the care of a GP in the UK. It is difficult to answer questions about your own treatment with the Clobetasol or Dermovate cream because we are each of us different. Particularly, treatment differes depending on how old you are - pre-puberty, adult or menopausal.
In my own case, something that had to be absolutely cleared before I used the ultrapotent steroid cream intensively was that any fungal infection was treated first. I had introduced a fungal infection because of damaging my vulva and anal skin by itching too much.
The fungal infection was cleared with Daktacort cream (this has to be kept in the fridge). This cream has miconazole with a mild steroid and between them they control any fungal infection and reduce the LS itch. Once that had worked its magic (about 2 weeks), then the potent (Betnovate) or ultrapotent (Clobetasol) cream can be used to really work on reducing the deep seated inflammation of the LS.
My GP wished to check on me every 2 weeks at first because the process was: 2 weeks of Daktacort, 2 weeks of daily Clobetasol, 4 weeks of alternate days Clobetasol along with the introduction of Oestrogen treatment, then 2 monthly checks. Unfortunately, my condition couldn't be stabilised because Lichen Planus also started up and so I was referred to the vulva clinic for further checks.
My recommendation is that you keep in contact with your GP. If you are sore in the places where you are applying the steroid it seems likely the either you have some fungal infection, or something in the cream is irritating your skin (we all seem to get more sensitive to chemicals once we have developed LS). Your GP should know about this soreness because (s)he can change your prescription to something for the fungal infection or an ointment-based instead of a cream-based steroid. I also think your GP should be monitoring your frequency of use of the steroid. 3 months of daily treatment sounds a long time to me, but only your GP can assess your condition.
All the best
TBF