Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: r.peters on January 19, 2023, 07:33:15 PM
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Hello Ladies
At 66 I have been diagnosed with Lichen Sclerosus (no other person in my family has this condition). My GP was giving me Thrush medication but it was not clearing up. As the wait time to see a NHS Dermatologist was very lengthy I paid privately to get a private appointment. I was given 500MG ClobaDerm to use every night for 1 month then every other night.
At first my rash responded well but came back with a vengeance after a month and I had to pay to see a private consultant again and was told to go back to using it every night.
This condition seems to itch like mad, look awful and cause pain around the vulva/clitoris area. I have googled the condition, the Consultant told me not to take any notice of the condition being reported as cancerous on the web. I have also read the various threads about the condition on this forum.
I have ordered some silk underwear, don't use any perfume products.. Can anyone that suffers with this awful condition offer any more advice?
I have had VA for many years and have been using Ovestin (as if that isn't enough to deal with !)...
Any thoughts of intimacy are proving quite stressful :-\
Any input gratefully received.. thank you Rebecca :)
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Welcome rpeters
I’m afraid I don’t have enough knowledge about this condition to give you any advice, but just wanted to respond so that you stand more chance of others members seeing your new thread and responding.
Big welcome once again :)
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Hi rpeters if you are on Facebook there is a really informative and helpful group on their called Lichen Sclerosis Uk support group .
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Hi Rebecca
I don't have any advice to offer, just empathy as I have LS too. Fortunately, for me, it's only mild so I just get intense itching, no rash or visible skin probs yet. My GP prescribed Betnovate with instruction to use for a week but I found that single applications just when I start to itch is enough for me. I also use Dermol cream for washing my vulval area every day.
I have no understanding of steroid creams and whether any particular brand suits an individual more than another, but may be worth asking your Dr for a different cream to try?
Really hope you find something that works for you as I know the itching drives me crazy!
Suzie
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Thanks you for your kind help ladies, it is much appreciated... :)
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I just wanted to say that sometimes people get on better with an ointment rather than a cream (fewer excipients). I treat occasional bouts of vulval dermatitis with Dermovate ointment, and was also prescribed this when it was thought I might have LS (I didn't, it was "just" VA).
Sorry I cannot help further, except to say that, on the private Vaginal Atrophy Facebook Support group, members there who have both conditions think highly of the similar LS groups. Elliebee has mentioned one.
Best wishes for a speedy resolution.
JP x
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Hi Joaniepat
I am currently using the ClobaDerm ointment. However, the blotches on my skin are getting worse and spreading. I have had to make another appointment (private) for next Tuesday with a Consultant for her to look at it for the 3rd time.. it is costing me a fortune! I am getting really anxious about it.. I emailed her and asked if there was an alternative treatment I could use but she hasn't replied. As the rash is at the top of my legs the knicker elastic seems to rub and because the skin is always touching the inner skin of the other leg I wonder if it will ever improve, it looks quite angry and itchy..
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Hi Rebecca
I too have lichen sclerosus with VA, and also a prolapse, so I have sympathy for you. I will tell you what has helped me, following seeing a dermatologist and also paying to see a private pelvic floor physio, for the prolapse primarily but she has been very helpful with the lichen sclerosus too.
The vulval dermatologist prescribed a pea sized amount of dermovate ointment to be used every day for two weeks primarily and then every other day for two weeks and then twice a week as a maintenance dose. She also prescribed using a toothbrush head amount of ovestin every day (and to continue to use every day on an ongoing basis) to be rubbed in around the vulval/clitoral area about ten minutes after applying the dermovate. I did this for two weeks and it really helped but when I tried to drop down to every other day the symptoms came back with a vengeance. The physio then suggested that I should split the pea sized amount to half a pea sized amount morning and evening, and then to try dropping it down but to drop it down to half a pea sized amount once a day, which I did and I am now in a place where I use a third of a pea size every day, rather than one pea sized amount twice a week. I continue to use the ovestin, and also use vagifem internally for the VA.
I have also found that castor oil is good to use as a moisturiser externally (this was recommended on a lichen sclerosus website/forum). Also go commando as much as possible. I no longer wear trousers, apart from occasionally some very soft harem trousers, and wear skirts/dresses with crotchless tights in the colder weather.
I wash with hydromol and have showers rather than baths nowadays.
These are all things which have helped me. I still have some times which are itchy/burny/painful, but using the above regime has definitely made it more manageable and the skin definitely looks healthier than it did.
I hope some of this may help you. It is a miserable condition and I hope you can find a regime that works for you. xx
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Hi Rebecca
I too have lichen sclerosus with VA, and also a prolapse, so I have sympathy for you. I will tell you what has helped me, following seeing a dermatologist and also paying to see a private pelvic floor physio, for the prolapse primarily but she has been very helpful with the lichen sclerosus too.
The vulval dermatologist prescribed a pea sized amount of dermovate ointment to be used every day for two weeks primarily and then every other day for two weeks and then twice a week as a maintenance dose. She also prescribed using a toothbrush head amount of ovestin every day (and to continue to use every day on an ongoing basis) to be rubbed in around the vulval/clitoral area about ten minutes after applying the dermovate. I did this for two weeks and it really helped but when I tried to drop down to every other day the symptoms came back with a vengeance. The physio then suggested that I should split the pea sized amount to half a pea sized amount morning and evening, and then to try dropping it down but to drop it down to half a pea sized amount once a day, which I did and I am now in a place where I use a third of a pea size every day, rather than one pea sized amount twice a week. I continue to use the ovestin, and also use vagifem internally for the VA.
I have also found that castor oil is good to use as a moisturiser externally (this was recommended on a lichen sclerosus website/forum). Also go commando as much as possible. I no longer wear trousers, apart from occasionally some very soft harem trousers, and wear skirts/dresses with crotchless tights in the colder weather.
I wash with hydromol and have showers rather than baths nowadays.
These are all things which have helped me. I still have some times which are itchy/burny/painful, but using the above regime has definitely made it more manageable and the skin definitely looks healthier than it did.
I hope some of this may help you. It is a miserable condition and I hope you can find a regime that works for you. xx
Thanks for your comments Haydo
I will certainly give every a go that you mentioned.
It's rather annoying as I suppose that each time you go to the loo you have to keep reapplying the creams!
I will report back..
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Another L.S. sufferer here. I use Betamethasone twice a week & wash the effected area with dermol cream.
Sometimes I get dry patches on the inside of my thighs so use the dermol there as well.
I was diagnosed with it about 18 months ago as I could see a dark spot that looked like a black head on my labia. Female doctor dismissed it but said "you do realise you have probably got LS" :o :o.
I was very grateful that this was picked up.
Mine is under control now although I do believe it will be with me for life & could get worse over time.
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Another L.S. sufferer here. I use Betamethasone twice a week & wash the effected area with dermol cream.
Sometimes I get dry patches on the inside of my thighs so use the dermol there as well.
I was diagnosed with it about 18 months ago as I could see a dark spot that looked like a black head on my labia. Female doctor dismissed it but said "you do realise you have probably got LS" :o :o.
I was very grateful that this was picked up.
Mine is under control now although I do believe it will be with me for life & could get worse over time.
I also have 2 spots that look like blackheads but my GP said it was nothing to worry about and never mentioned LS!
You have a cream that treats eczema and dermatitis .. it's strange how each person with LS is given different treatment.. My skin is very red and fierce and blotchy after having a lukewarm shower this evening. I was tapping the skin dry with a flannel and I even found that quite tender. Any idea of being intimate at the moment would be unbearable - it's quite worrying really as my husband is younger than me.. ???
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Any idea of being intimate at the moment would be unbearable - it's quite worrying really as my husband is younger than me.. ???
Hi Rebecca,
Same here ........ luckily he's a patient man.
My GP said my black spots were nothing of concern also.
I agree with the othere ladies regarding the FB group, they know an awful lot & it is a private group & very well mamanged.
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Any idea of being intimate at the moment would be unbearable - it's quite worrying really as my husband is younger than me.. ???
Hi Rebecca,
Same here ........ luckily he's a patient man.
My GP said my black spots were nothing of concern also.
I agree with the othere ladies regarding the FB group, they know an awful lot & it is a private group & very well mamanged.
Cazikins - I don't have a FB account but if I join through my husbands account can any of his friends see which groups you have joined? I would rather keep this private...
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I just wanted to say that sometimes people get on better with an ointment rather than a cream (fewer excipients). I treat occasional bouts of vulval dermatitis with Dermovate ointment, and was also prescribed this when it was thought I might have LS (I didn't, it was "just" VA).
Sorry I cannot help further, except to say that, on the private Vaginal Atrophy Facebook Support group, members there who have both conditions think highly of the similar LS groups. Elliebee has mentioned one.
Best wishes for a speedy resolution.
JP x
I cant use the Dermovate cream, but I'm ok with the Dermovate ointment. Also use Ovestin every night externally and wash with Cetraben dermatological cream. I have never had a biopsy for LS but the vulva specialist said I had inactive traces when examined so don't know for sure if it's LS or VA when I flare up. The Dermovate sorts it out anyway, whatever it is.
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Tnx.
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Hi again Rebecca,
The FB group is private which means that only members of the group can see what other members post - but I very much doubt your husband is... ;D ;D.
A problem this would cause is that the groups admin may pick up from your husbands name that he's a man, which is a definite no no. The other issue you would have is that your husband will see what you write in the group.
You could set up an account for yourself - it's quite easy to do. If you just use it for the private FB group you will get a lot of support. No one apart from members will know you are on there, plus your could use an alias name rather than you actual name.
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Thanks for the FB information Cazikins...
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Hi Rebecca
I don't have any advice to offer, just empathy as I have LS too. Fortunately, for me, it's only mild so I just get intense itching, no rash or visible skin probs yet. My GP prescribed Betnovate with instruction to use for a week but I found that single applications just when I start to itch is enough for me. I also use Dermol cream for washing my vulval area every day.
I have no understanding of steroid creams and whether any particular brand suits an individual more than another, but may be worth asking your Dr for a different cream to try?
Really hope you find something that works for you as I know the itching drives me crazy!
Suzie
Susiemc, was also recently diagnosed with mild LS based on visual inspection..I also only have itch that comes and goes and occasional redness. Was given mild.hydrocortisone cream and very vague instructions to use twice a day until itch went and then only use when a flare.My itch can be there in the morning and gone a few hours later. It can be there 2 days later again and comes and goes in this pattern so no real flares at such. So I never know when to use the steroid and for how long etc. I initially only used for 4 days as wasn't given clear instructions. Everyone else I hear about has to use maintenance twice a week so wondering if I've been given wrong advice. Also wondering if it actually is LS, can't understand how gynae can tell from just looking. Gynae also told me I don't need vagifem as taking systemic hrt! Surely needed for LS also to keep area moisturised?
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Hi Bungo
I've been reading what I can and get the impression that using steroid cream regularly might help with prevention of flare ups. So I'm now trying just a pea size amount of betnovate once a week, even if I'm not itching. If I got itchy I'd probably use it then too. Only on second week so no idea yet if this is beneficial! I'm due to see my gp in a couple of weeks to have my mirena coil checked so I'm going to ask her what her opinion is on weekly 'maintenance' dose of steroid.
I've joined a useful group on FB - Lichen Sclerosus UK Support Group - where I'm learning lots (mostly that I'm getting away lightly at the moment and that my GP is absolutely fantastic!)
Good luck with your symptoms.
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Thanks Suzie, I also joined that group and that's where discovered re using frequently. I don't know why wasn't prescribed betnovate . Worried too about causing thrush from using steroid so I've occasionally used Daktacort which had at home anyway. Curiosly my 85 year old mother has been using canestan HC for years now once a week so wondering if she also has LS. She said it's working well for her. Hope you get on ok too with treatment..I'm sick of the unpredictability of it,not knowing when wake up if will be able to wear underwear/cycle etc
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Hi r.peters!
I’ve have L.S VA and vulvodynia, it’s no joke. I feel for you!
I used Dermovate when it was bad which helped.
And I personally wouldn’t wear the silk underwear. It can make you hot ‘down there’ and increase the itch. My specialist recommended pure cotton non dyed (so white) underwear for it. I wash with Dermol and protect the skin with cetraben.
🙂
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Also re regime there is a lot of out of date and inaccurate info out there re LS on the Internet. Approach used to be to treat with dermovate and then only re-treat if a flare. But the approach most consultants take now is to prescribe a maintenance dose of dermovate once or twice a week (pea sized amount) to keep things under control. Betnovate is weaker than dermovate I think.
Dermovate ointment works better than the cream as adheres and absorbs better.
Daily moisturising is important - Yes OB is brilliant for this and lots of info on their website re benefits of this for lichen sclerosus and then topical oestrogen can be beneficial too.
Epaderm cream is great for emollient in the shower. Epaderm ointment is great as a barrier cream ie if go swimming or to protect from urine.
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I have an update ladies...
I was suffering so much I went back for another private appointment only to be told I had Acute thrush! told to stop using the Dermovate ointment and Ovestin and take a thrush tablet by mouth for 7 days and apply Daktarin cream for 7 days. When I completed the 7 days, I can't tell you how much better it all is down there and all the redness has also gone from my inner thighs! I am supposed to then continue using the Dermovate cream every other day on top of Vulva but to be honest I'm NOT sure if where I'm putting it is ok...
Anyway, having been taking Ovestin for Vaginal Atrophy for many years I was worried about stopping it but I felt much better. I started the dose again and my clitoris and surrounding area feels aggravated and I am getting the occasional sting again and redness. I wrote to the Consultant and she said to ask the GO for Estriol 0.01% vaginal cream as that may irritate less. Or use Ovestin once a week or use fortnightly...
Has anyone else had Ovestin aggravate them after using it for such a long time ?
Thanks ....
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I've been using it for years and yes it still stings slightly so I apply Bepanthen on top of the Ovestin and that stops the stinging. I think others mix it with either a moisturiser or olive and bee cream.
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A UK government petition to raise awareness of Lichen Sclerosus.
Could you sign and share please?
https://petition.parliament.uk/petitions/632780
It is asking the UK government to fund research, and increase funding to improve awareness and treatment of LS as early treatment is so important to prevent more advanced symptoms.
This petition is being shared on Lichen Sclerosus and Vulvar Cancer UK Awareness website, Facebook, twitter and Instagram pages which also have lots more info.
The website link is https://www.lsvcukawareness.co.uk/
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Done.
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Bumping this in case it’s been missed.
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Hello all, I have just been diagnosed with LS. I thought I had Vaginal atrophy and that I could not get on top of it. I have been back to the GP at least 6 times in 6 months regarding it, my first flare up was 7 months ago. I saw a different GP each time, I waited for 6 weeks to get an appointment with a GP I had a telephone consultation with a GP re HRT who I found caring and listened to me. She examined me and prescribed steroid cream stating I may need to be on it for life x2. She was very helpful and had trained in the local Vulval clinic (who knew there was one). I am very upset and disappointed, I knew something was wrong as it was so painful. Ovestin cream made me much worse and in fact I consider it exacerbated the symptoms significantly. I am now on Vagifem. I signed the Petition.
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Hello all, I have just been diagnosed with LS. I thought I had Vaginal atrophy and that I could not get on top of it. I have been back to the GP at least 6 times in 6 months regarding it, my first flare up was 7 months ago. I saw a different GP each time, I waited for 6 weeks to get an appointment with a GP I had a telephone consultation with a GP re HRT who I found caring and listened to me. She examined me and prescribed steroid cream stating I may need to be on it for life x2. She was very helpful and had trained in the local Vulval clinic (who knew there was one). I am very upset and disappointed, I knew something was wrong as it was so painful. Ovestin cream made me much worse and in fact I consider it exacerbated the symptoms significantly. I am now on Vagifem. I signed the Petition.
So sorry to hear this BooBoo. I can understand why you are feeling upset. Perhaps you would find it helpful to join the facebook group mentioned as it sounds like a very helpful place.