If you are searching for information for lichen sclerosus, it may be helpful to know that there are more questions from patients than there are answers for. There are many aspects of living with lichen sclerosus that the medical profession are still unable to give answers for. The other thing to be aware of is that the internet is now on overload with published medical papers, some of which are now very out of date and they have not been removed. There has been no work done on establishing which medical papers are still current and up to date. Remember other patients will have similar experiences to you and it may help you to feel less alone when you read them and join forums. However, everyone’s case of LS is unique to them. When you read horror stories, it does not mean that everyone will go through the same thing. Most people do well with treatment and their symptoms are under control and these patients are less likely to share success stories because they have left their fear and anxiety behind them and they are in remission. You cannot know, when you read messages on forums if that person is still in difficulty or if they have got better and are perhaps not sharing their new found relief and good news. Drastic images on medical sites are usually worse case scenarios, which is why doctors like to take pictures. There would be no point in taking pictures of well managed LS because the vulva would just look normal. However, none of the medical sites (correct WLSS if we are wrong) show before and after images of white vulvas one month after treatment, when the improvement is almost unbelievably good in a high number of cases! Bear all these things in mind when you search the internet. If you do frighten yourself, remember that you can always make contact for one to one support.
LS the basics
After diagnosis – what a happens next?
You should start treatment – preferably BAD Guidelines as minimum. The Internationally agreed treatment of choice is by very potent steroids (clobetasol propionate/Dermovate in the UK).
I have read a lot of bad information about using steroids and my gynaecologist says only to use it sparingly and my pharmacist says not to use it at all, what is the truth?
Much of the fear of steroids and negative information on the internet has arisen as a result of misuse and poor medical instruction. Studies have shown that use of steroids as stated in the BAD Guidelines may resolve symptoms in most patients. Sometimes you may need to treat for longer but your doctor should advise you. Maintenance treatment may be required, if so, twice a week, is effective, well tolerated and safe.
Stick to the treatment plan even if your symptoms improve quickly. However, this condition is different in everyone and some people may need more treatment and some less.
You may find improvement within a few weeks but everyone’s needs are varied and some people make take longer. It is essential for you to make sure that your doctor has given you specific information on how long to treat for and how much medication to use and where to apply the treatment.
Use treatment sparingly
This is a popular term used by some doctors and it gives no real indication of how to use the treatment. If you are given this information do try to get the doctor to explain how much he/she really wants you to use! You could also ask if the doctor wishes you to treat in accordance with the BAD Guidelines.
Obtain information about using soaps/emollients – these form the basis of good skin care and can decrease and help to control symptoms. (More information to follow.)
What you may need to know:
What happens if the treatment does not work?
You need to return to see your doctor. You may have severe disease that needs more treatment and the BAD Guidelines state that uncontrolled symptoms must be seen again.
What happens if the treatment seems to make things worse?
You need to see your doctor to find out why things seem worse. It may be that you may have got an infection e.g. thrush and your doctor can take a swab to test for this. Rarely, you may become allergic to your steroid treatment. A treatment review and change of steroid can be useful.
What do I do if my symptoms return and I have been discharged from the vulva clinic?Flare ups or return of symptoms is common and should resolve with a week’s treatment, if it does not, you need to be seen again.
Why use steroid treatment?
To control symptoms and to improve the pallor of the skin and to reduce scarring (fusion of labia, clitoral hood).
What happens if I do not treat/use conventional treatment?
In most people the symptoms and condition will progress and pallor and scarring may worsen.
Do steroids thin the skin?
Treating the LS areas of skin reduces the inflammation and allows the skin to return to normal. Over use of steroids may thin skin however this is due to overuse or misuse.
How will I know when it is better?
You will stop itching. Sex should become more comfortable and there should be less splitting and if you examine yourself you may well find that the paleness and bruising (purpura) have improved or gone.
How common is LS?
Thousands of men, women and children suffer from LS all over the world. It is impossible to get an accurate figure and estimates vary from 1 in 30 to 1 in 1000. Many doctors now feel that earlier references to LS being ‘rare’ are no longer applicable.
What is the role of HRT/Oestrogen replacement in LS?
Women with LS may also have all the same problems as women without LS after the menopause and may need some hormone replacement treatment as well as treatment for LS and usually local HRT (applied to the vulva / vagina). Treatment may help lubrication during sex and may help to make the skin less fragile and less prone to splitting. However, it does not treat the lichen sclerosus itself.
Fear of cancer
The fear of LS becoming cancer is very common and the best way to overcome your fears is to realise that vulval cancer is less common than the fear that people have. More than 1000 women a year will get vulval cancer, but there are other conditions that cause vulval cancer. Penile cancer is also associated with LS and the signs of early cancer are the same to look for as in women. Cancer does not affect young children. The early signs need to be reported to your doctor as soon as possible. Early signs of cancer may be increased soreness, lumps, raised warty areas of skin that may be pale or darker in colour, and ulcers or sores that do not heal quickly. It is important to remember that not all lumps will be cancer and doctors are always pleased to be able to reassure patients. In view of the risk, patients are advised to make regular vulva self-examination. See video http://www.channel4embarrassingillnesses.com/video/how-to-check-yourself/how-to-check-your-vulva/
What happens if I am one of the small number of women who get cancer? Is there treatment available?
Like all other cancers, vulval cancer needs to be detected and reported to your doctor as early as possible. The treatment involves surgery. The amount of surgery will depend on how soon the cancer is found and a biopsy is usually performed to confirm the diagnosis. If found early, the surgery will be less and many women find that they are still able to enjoy intimacy with their partners after healing takes place.
This page has been written by Fabia Brackenbury (founder of this group) asking questions and replies are by Professor Fenella Wojnarowska, Professor Emeritus – Dermatology, Oxford
The following information below has been added from the Australian site www.caredownthere.com.au Written by doctors. The only comment this group would make is that in the UK steroid ointment is preferred to ‘cream’ – it may be that ointment is not available in Australia. This group endorses the views shared in this information from Australia.
LS and cancer of the vulva
We know that patients with LS are at risk for vulval cancer. It does appear however that treatment minimises this risk.Vulval cancer looks like a lump or ulcer or a sore that doesn’t heal. If you suspect you have LS and something like this develops, see your doctor right away.
This is why it is important to have a definite diagnosis made with a biopsy to confirm LS.
What treatment is used?
There are two phases of treatment for LS
Getting better
Staying better
Getting better
It is now really well proven that potent topical cortisone cream is the best treatment for LS. The response is rapid and usually complete. LS is easy to treat, so long as you accept the need for cortisone.
Cortisone creams are extremely safe and effective for LS. There is NO DOWN SIDE. It is much safer to treat this condition than not to treat. There is no other well proven, effective topical treatment. PLEASE DO NOT DENY YOURSELF THIS TREATMENT BECAUSE OF ANYTHING YOU HAVE READ ABOUT HOW DANGEROUS CORTISONE CREAM IS.
Staying better
Almost all patients with LS need ongoing treatment with weak cortisone cream to stay well, prevent scarring and minimise the risk of possible cancer. This treatment is also very safe long term in LS. There are very few risks and side effects if it is monitored regularly. Again, DO NOT DENY YOURSELF EFFECTIVE MAINTENANCE TREATMENT. See your doctor regularly for monitoring and reassurance that all is going to plan. This includes cancer checks. There are some doctors who don’t believe that patients with LS need long term follow up. We don’t agree with this approach. Early detection of vulval cancer could save your life.
Well controlled Lichen sclerosus
This group asked one of the consultant authors, of the BAD Guidelines what information was given in her clinic when she discharged patients and this is the information kindly provided.
After treatment in the clinic, your lichen sclerosus is now well controlled and further follow-up will be done by your GP.
It is important that the vulva is examined annually and you will need to make an appt with your GP for this. Using the emollient as a soap substitute should be continued and if you get any itching, then you can use your prescribed steroid ointment once daily until the symptoms resolve (usually within one week).
It is important that you see your GP urgently, and do not wait for your routine appointment, in the following situations:
- You develop any persistent red areas, lumps, sores or small cracks in the skin that do not disappear after using your steroid ointment once daily for one week
If your symptoms of itching etc do not resolve after using your steroid ointment once daily for one week.
If you develop any new symptoms
You can then be referred back to the clinic for further assessment and advice.
This group also recommends you read the handout from American Dematologist, Libby Edwards, who is a past President of the ISSVD. Use this link.
I have just read the information above and feel a little reassured. Just two things – what is ‘the emollient’ instead of soap and also have you heard about (and I’m sure you have) Perrins Blend and what do you think?
Thank you so much
Shirley
Unfortunately this group receives a lot of emails from men and women who have tried Perrins and it has not worked for them. No one but no one should be encouraging people with lichen sclerosus to stop conventional treatment in favour of any non steroid treatment. Failure to treat with steroids can lead to scarring. However, everyone needs to look at the reasons why they want to use creams. It may be about expectations. People are very desperate sometimes for relief and medical information from doctors may not have been sufficient to get things under control. That is when people turn to the internet for other solutions. Most creams are capable of relieving soreness and itch and making the skin more comfortable. Some people do report more comfortable skin after using Perrins. However, if the expectations are that creams will cure everything then some disappointment may be experienced.
I recieved my diagnosis almost 2 years ago. My gynecologist has referred me to a specialist due to progression of problems. I am so glad to find this website. The information is clearly and honestly presented…..and yes, some of the information on other websites scared the pudding out of me. Looking forward to the reopening of your website. Thanks!
I was not given an emolient soap by my physician nor did she recommend one. Her recommendation was to wash only with water. I feel cleaner when I used some type of soap. What type or brand of soap would you recommend.
The reason why nobody recommends soaps is because they can irritate the skin. Unfortunately, I am not able to recommend soap. The vulva makes its own secretions that are responsible for keeping it healthy and so plain water is good. Your doctor has given you good advice.
I have found Burt’s Bees body wash to be an agreeable way to wash without soap. Since I am also a life long eczema patient, Burt’s Bee’s products agree with me all the way around. My LS is all over my body, but don’t have it in my genital region (yet…).
Hello Gal. I am familiar with Burt Bees products. The thought of putting it on my genitals makes my eyes water just thinking about it! I also have LS on other parts of my body and I find that creams that I would never dream of using on the lady part, are good for using on the body LS.
i was told to use dove unscented soap and it is going very well.
Try Aqueous Cream from the pharmacy. Water soluble and used for eceama (spelling??) and other dry itchy skin problems.
What wonderful information,I was diagnosed 2 years ago,I am 60,its awful no sex life now,but thankfully have a caring husband,it seems when i am on antibiotics for anything it helps,but that is only random,I wish there was a cure,but don’t we all wish that with so many illnesses.
My Mum found that whilst on antibiotics her LS was a lot better. I wonder why?
Penny, my guess is that her relief wasn’t due to improvement of the LS but most likely she also had a very common vaginal infection called bacteria vaginosis (which causes itching and irritation). The antibiotic may have cured the bacterial vaginosis.
This site seems very practical and reassuring. I was only diagnosed 3 weeks ago and will see the gynaecologist in 10 days’ time. When I found out what I had, I looked it up online and found there’s a link with cancer of the vulva, which really scared me, especially since I’ve had a problem for 36 years and just lived with it! My doctor has reassured me and I’m feeling now that it’s unlikely to be cancer. The steroid cream has improved my condition beyond all recognition. I wish I’d sorted this out years ago! I feel angry though that we women are so ignorant about vulval self examination. None of my friends was aware that this was important. I think we need to ‘come out’ about this even though it’s highly personal. Ignorance is decidedly not bliss in this case.
same thing! I developed this in childhood so I never knew it was abnormal, 36 years of living with this. I wish there was more info on this in the public knowledge.
My Little Girl has just been diagnosed at 8 years old. She was so bad she could barely go to the toilet but she insists she was not sore till that weekend. By the Monday she was having to sit in the bath to go and when she went to the hospital they said it was such a bad case they where supprised she was able to pee at all!. Im realy hopeing that the condition will go in to remision for her at puberty as I have been told may happen. Shes been useing creams for 2 weeks but is still not looking as good as the Docs would like so shes been given a stronger cream and 3 month treatment plan. Shes much more comfortable now but realy not happy at being made to wear skirts most of the time and ans had had all new pjamas for Christmas that shes not alowed to wear to bed now poor little love.
So glad I found your site after reading all the other alarming information. I was diagnosed a year ago with LS, but everyone has talked of Gynaecologist referals so how come I ended up in Dermotology? What worries me are the lumps & bumps which are referred to and which I have plus blisters. Help is this normal? I am using an emulent based cream for washing & barrier protection & a stronger steriod cream (as the first cream didn’t work, but having said that, was I not using enough, as they say sparingly!) How do you know if you are reacting to the creams etc with this problem? How demoralised I feel as a woman who looked forward to & shortly enjoyed the freedom of sex after her hysterectomy to now not being able to have sex. (Sorry feeling low). Its also funny that after the ‘op’ I started swimming again & it is said that clorine can affect you, it was a few months after when problems started together with a reaction to 2 medications really kick started it. I also have read that you can be alergic to ‘sperm fluid’ is this then also another starting point after the ‘op’ since previous protection used?
This website and information is excellent, thanks so much for providing it. When I was first diagnosed, I too scared myself silly trying to find more information on the web – with steroid cream, I find it easy to manage. I also take a probiotic supplement (bio-acidophilus forte), and I don’t know why but it makes a marked difference to my symptoms and my use of steroid cream has gone down a lot.
Some people were asking about emollients to use instead of soap, I use E45 cream for bath shower – it is slightly more runny and comes in a pump. I feel very clean and it doesn’t irritate, just provides moisture. Best of luck to all.
so glad i found your website had ls for about 2 years keeps coming back you get worried and being able to talk about it with others and knowing your not on your own certainly helps i lost my husband 5 years ago i shall keep in touch via this site thank you
Good info on this website,but my daughter is only 5 and has been diagnosed with LS the doctor says we should just wait and hopefully it will get better. It has just come back with a vengeance. I would be glad for some advice.
Hello Louise – I have written to you privately because for legal reasons, I could not give a full reply in public. However, for the sake of any other mother reading this message, the advice is to ask for your child to be referred to a consultant specialist for correct treatment. It would be unwise for any doctor to take the view that LS may just go away, in the face of evidence to the contrary and to leave a child untreated and suffering. I hope the message I sent to you was helpful. Fabia.
Hi Fabia, thanks for that I know now to go with my gut feeling, I will go back to my doctor and ask to be reffered to a different specialist.
Kind regards
Louise
Hi I have a 6 year old daughter that was finally diagnosed with LS this past summer. Don’t let your doctor ignore this. We went through a year of kidney infections,constipation and pain and she was even admitted to the hospital before someone caught on. She is doing so much better now that she is being treated with a steroid. The sooner you start the better, my daughter already has scar tissue. I wish you both the best. Danielle
I went through years and years of urinary tract infections and constipation as a child. I was finally diagnosed with LS at the age of 23 so your daughter has a fabulous head start to be both diagnosed and treating her LS at such a young age. I hope she is one of the lucky ones that goes into remission with puberty.
Oh me too! My little one is 8 and just becoming more body concious so she is finding it hard at school. I worry for her future if it dose not clear up for her at puberty…Its the silly things like she is at cubs and will be wanting to go away on camps. For most kids a week of not washing properly is no big deal but she showers twice daily and has to use her emolient and then she has to do her creams when shes needing them. Shes great with doing her cream but tends to need help with washing. Shes also a keen dancer and wants to go to dance college in the future. Spending hours at a time in lycra is not going to be any good for her.
Hi all
Probably unusaly for a man to comment but I to have recently been diagnosed with LS, doesn’t seem to be a problem just a bit of pigmentation change really.
However I have been prescribed a cream can’t remember the name but it is a 1% Hydrocortisone cream (Derma something) doesn’t really seem to do anything and the instructions for use were a little wishy washy to sat the least, I have read the BAD guidelines and it seems that the treatment differs somewhat from those
I was diagnosed at a GUM clinic (not the greatest of experiences lol) having been advised by my GP to attend as it was out of his experience, would it be a better move to visit my GP again and ask to be referred to a Dermatologist?
many thanks
Ian
Hello Ian, I know we do not often get messages from men but you are welcome here and there are other men around. I am glad you have read the BAD Guidelines because they are pretty much the LS bible and like I have said in ‘the Basics’ link on this site, the BAD Guidelines recommendation for treatment on initial diagnosis is the least any patient should expect. I cannot comment on the services of your local GUM clinic and by and large I know that some of them do offer an excellent service and many will be offering the BAD approach to treatment. However, it does seem that the treatment and advice given to you may fall short of what you could expect as standard in the UK. Your GP could read the BAD guidelines and treat you in accordance (Dermovate ointment is the treatment of choice for lichen sclerosus, whether it is male, female or childhood lichen sclerosus) with what is said there and see if that resolves the symptoms and if it does not then it is probably a good thing to ask for referral to a dermatologist. I do not know where you live and would not ask you to disclose that in public here on the site, but if you need help with finding a clinic later on, let me know. I hope that this helps Ian.
Hi Ian so sorry for the delay but only just found this section on site, having chatted with Fabia. I have had l.s. for nearly 30 years and I have quite white discolouration on glans of penis, now slowly moving down the shaft onto foreskin. I use clob, as a dermovate cream, in small doses as and when I feal it is necessary, if it flares up a good thumb nail blob of it for a few days, dropping of to a small smear now and again, I then use vitamin e oil and emu oil massaged in once often twice a day ensuring good blood flow to the region. I believe this stimulation the ensure the toxins are removed from the area. Being a masseur we know this removes toxins from the body.
30 years on I can still maintain an erection , my foreskin is still supple , thanks to oils, and most important of all is to keep STRESS levels down…..
Cheers
Pete
Thanks for all the info. 3 months ago my GP diagnosed ‘suspected’ LS. She referred me to a Consultant gynaecologist who subjected me to an excrutiating internal exam – what part of “I’m raw, sore and itchy” didn’t she understand! I refused a biopsy because I didn’t think I had LS – I’d read up on websites and decided that as I don’t have white vulval tissue, scabs, blisters or weeping sores, etc. this couldn’t be my problem. My real problem is that my GP won’t consider any other possible causes; she’s adamant that I have the biopsy taken first. She also refused point blank to allow me blood tests for hormone levels. She said my hormone levels were irrelevant to the condition, but I read everywhere that it’s more common in post-menopausal women. My homeopath diagnosed it as an autoimmune problem caused (or exacerbated) by very low oestrogen levels (I’m 2yrs post menopause). She says it can be treated by a long term course of oestrogen replacement cream, however after 3 months of continuous use there’s been no improvement. My vulva is pink and healthy looking (yes, I do examine myself). My only symptoms are a complete lack of stretch in the vaginal tissue and a tendency to dryness and occasionally severe itching. Like most of your other writers I’m faced with the awful prospect of never having sex again in my life – and I’m only 53! Do you think I should go down the biopsy route?
Kind regards,
Jill
Hello Jill. None of what you say is easy. Let’s break it down a bit. First of all, not everyone who has LS has white skin. It is a condition that can present differently in everyone. The issue with a biopsy…the medical profession and doctors I work with tell me that a biopsy is not always needed to establish a diagnosis and this is on the basis that the physician is happy to make the diagnosis based on taking a history of your symptoms and also what is seen. So it could be that you do not have lichen sclerosus. It is also possible that your GP does not have knowledge of what other causes there may be. Remember that GPs have very little instruction in dermatology (sometimes less than 6 hours) during training and even less in vulval disease. Your homeopath has given you an unsubstantiated view of what is causing your problems in how she has described LS. The hormone view is only a theory and to date, nobody has been able to prove or establish what causes LS. In a recent talk a top (retired) consultant dermatologist and leading researcher in LS explained that this condition may be caused by autoimmune dysfunction, hormones, genetics, virus or just plain bad luck. If you really do have LS, then hormone cream may assist with the skin elasticity but it will not treat the lichen sclerosus which is active under the skin. If you do not have LS and your problem is hormonal then I would think a creame would help you. So what do I really think? Ask your GP to refer you to a local vulva clinic or the nearest you can find that has a dermatologist in residence, talk everything through with the consultant there and ask for the diagnosis to be confirmed or not. If that consultant is not happy to make a full diagnosis of LS on the basis of your symptomatic history and vulval appearance, then that consultant may wish to take a biopsy and it may be helpful to you in the long run to have that done. Sex….well that is a big problem for us, however, lots and lots of us are having sex and once your symptoms are under control with an established diagnosis as well, so that you know where you are, I would not rule out the possibility of being able to have sex, in fact, after treatment, a high number of women are relieved to find that they can get back to enjoyable sex. I was 48 when diagnosed and now 64 and sex is still possible for me (finding a new man to enjoy it with is proving far, far harder!) So, start the ball rolling with a referral and wortk through some of the suggestions I have given you and I hope that they will be helpful to you Jill. Also remember that referals, appointments, diagnosis and outcomes all take time, more time than any of us want to wait but that is the situation and so the sooner you get a referral the sooner you may be able to move forward.
I encourage you to have the biopsy. I just got diagnosed last week and my biopsy report and culture report were presented to me today. I also only had that itching, burning, raw feeling. I did notice the discoloration of the skin. Biopsy showed no cancer; but it did confirm LS. Culture also confirmed LS. Glad I know what I am up against. I am 66 years old and female. I have had hypothyroid since I was 18 years old; Diabetic for 11 years and had a bad medical experience 2 months ago after my GP put me on a second regime of oral steroids to fight off bronchitis. Which of these caused my LS??? Who knows. I too was scared. Just have to continue with treatment and hope for a better future. This is going to be another hurdle. I refuse to have this limit my happiness. Sex is over rated and way. (laughing) Atleast we can still see and have our wit. There are worst things in life. Be strong. Find out what you have and cure yourself. I hope this was helpful.
yes, absolutely, do it…i had a biopsy, and it came out lichens sclerosis..my gyn dr. had me use clobetesol ointment (cortisone) 2x a day for a months, and over the counter cortisone after that if i need it for itching…it has been about 3 months now, and i have only needed the otc cortisone a few times. i also use a vagifem insert 2x a week. i am doing quite well with this regime.
good luck with your biopsy and condition..best to get your condition diagnosed, then treated.
correction: the clobetesol was for one month….
I just found out my 5 year old daughter was diagnosed w/ LS and I am so thankful I stumbled across this website it has calmed my nerves a little. I am still concerned about the treatment she was prescribed Betamethasone ointment, I just picked this up today and am supposed to start treatment at bedtime. My concern is everything I read about this says NOT for children under 13 and all the horrible side effects. I see several comments about not being afraid of treatment but does this apply to a 5 yr old? Also my Dr. said to put on a thick coat of this ointment and everything I read says to use sparingly. Any advise on how much to use??? Like I said I am thankful I found this website and am anxiously waiting for feedback. Thanks!!!
Hello dear concerned Mum. Yes, it is OK to use the treatment as your doctor has said. Remember the internet is full of people governed by fear, and the advice to use sparingly seems to come from those medics who have less training and knowledge than others. You might say that those who say to use sparingly are the ones to avoid in terms of finding a good doctor. I do not know where you live – are you in the UK? If you need more help, feel free to email me at admin@lichensclerosus.org Remember also that when first diagnosed everyone, including children need to be treated quite aggressively to get things under control, you will not always have to use the treatment so much as things improve.
I am so happy to find this site! I was “diagnosed” a few months ago. I am currently treating my LS with clobetasone ointment. It helped a great deal at first, but I was told to wean myself off it to no more than every other day, once a day. My PA (physician’s assistant) at the women’s health center said that if it didn’t get better in a few months, to come back so the doctor could do a biopsy to determine if it is actually LS. I am heading down that road, I guess, as it isn’t feeling better after application once a day, every day. I almost hope it is LS just so I’ll know what I’ve got. I have been misdiagnosed by so many doctors, nurses, etc. Are there other conditions out there that mimic the symptoms of LS? besides bacterial vaginosis, yeast infections, stress and “it’s all in my head?” My PA was adamant that hormones played no part in this condition, because “you’re still getting your period.” Personally, I am skeptical. Thanks again for this site. I don’t feel so alone now.
Hello Kathleen – welcome to our lichen sclerosus community at WLSS. There are a lot of issues here. First of all, I need to say that doctors all over the world tend to have different views about LS and about treating it. In some ways this is good because not everyone who gets LS is the same but in other ways it is not so good. The cause of LS is not known. The internet is wild with theories and I feel in the USA, the hormone theory is a favourite suggeston among doctors and patients alike. In the UK there are doctors who believe LS may be caused by more than one thing and hormones may play a role, so I am always happier to hear that a doctor or medical profession promotes the ‘unknown’ view rather than being adamant about it, but for the time being your PA may well be correct in what she says. Even if hormones were proven to be the cause, then the medics would have to figure out how to control that syndrome. So it goes on and on! My own view is that in many respects it is not important to know what causes it, so much as how to treat it and how to live a good and comfortable life in your own personal case. I have been living with LS for 16 years. Running the support function for 14 years. Misdiagnosis is very common indeed, on a worldwide basis. In the UK the medics would suggest that biopsy after a term of treatment for LS may have limited the ability to find LS in the biopsy. Research has shown that steroid treatment actually does clear the condition (temporarily) below the skin surface, so when a biopsy is done there is not much to see in the histopathology. It is not so much that other vulva conditions ‘mimmick’ LS it is more a case of vulva symptoms tend to be similar in a number of other conditions. Best to have tests for infections and yeast to make sure these are not present. In the UK biopsy may be done to rule out things rather than rule them in. It takes an expert to take a good medical history and to make a very close inspection of the vulva. As far as treatment goes we have guidelines in the UK that offer a suggested treatment of clobetasol (or similar) once a day, every day for four weeks. This will work well for some patients. However, there are many UK dermatologists who believe that hitting the condition ‘hard’ on diagnosis is more effective and some women are asked to use their treatment 2 times a day for three months and then reduce slowly to a maintenance treatment of two or three times a week, once a day. Obviously, you need to discuss this further with your PA as I am not allowed to offer direct medical advice. All I can do is offer you the different views and ways of treating that are used and ask you to discuss it with your own doctor.
thanks so much for the reply! It was very informative and now I feel more confident about asking questions the next time I see my PA. It is hard to know what to ask about conditions like this, isn’t it? Especially with all the crazy stuff on the internet nowadays. This was very helpful, thank you.
Like everyone else, i am soooooo happy that i’ve found this helpful & comforting site, I was diagnosed with LS 6 months ago but have been suffering for years & just putting up with the symptoms, I am 42 years old, luckily i have a kind understanding partner. My gynocologist spotted my LS when i had an internal scan for a cyst 6 months ago & prescribed me with a steroid cream to be used twice a week & to go back & see him in 6 months, my appointment is this month but i am worried because now i am totally white down there with a cut that just won’t heal, itchy lumps in both lips & a sore raised area towards the bottom of my vulva, the cream doesn’t seem to have helped at all & just climbing into the driver’s seat & i tear also i wake up everynight itching & have to get up & put on canestan cream, sorry everyone I’m feeling really low about it all at the moment & feel that i can’t talk to anyone so it’s nice to be able to offload to people that understand, any helpful tips on coping with this will be much appriciated, thank you. x
Hello Nicky. Welcome to the lichen sclerosus community here at WLSS. It is very sad to see that while your gynaecologist has been observant enough to find your LS whilst dealing with another problem, which is wonderful and a shame more gynaecologists are not more observant. He/she seems not to have given you enough information about treatment and the standard of your care falls below the recommended guidelines. The BAD Guidelines (link above on the basics page) give the minimum treatment needed on diagnosis and patients need to be followed up until symptoms are under control. Using your steroid treatment twice a week is not enough and this is why things are not improving for you. I do not know where in the world you live and standards vary for treatment of LS throughout the world. The only helpful tips that come to mind are to ask your gynaecologist why you were asked to treat only twice a week when the recommendation is to treat daily for several weeks, The other tip would be to ask for a second opinion from a dermatoloigist with a definite interest in vulval disease. If you are in the UK you can use the information on the link ‘finding a doctor’. I hope you appointment goes well. Six months is a long time to be following an inadequate treatment plan and if you had been advised under the Guidelines, things may well have improved for you. It may be that you will need to take a ‘firm’ line with your doctor to ensure that you come away from your appointment with a more suitable treatment regime.
Thank you so much for your quick reply & your advise, I have lived in Spain for 14 years but i am seriously considering a visit back to the UK to see my family doctor who is fantastic!!! & hopefully he will be able to point me in the right direction but unfortunately i don’t have any leave until November so in the mean time i will follow through with my gyno & hopefully get some help, when i was at my lowest i tried to book an appointment with a private gyno but to my suprise it was my same doctor who works also for the social security??!!!
I am so happy that i have found you & will take your advice & use the cream every night & hopefully get some relief & see some improvement.
Once again thank you soooooo much. x
Hi everyone – how lovely to have a chance to share with people who understand! I’m 53 and was diagnosed over 10 years ago. Thanks to Dermovate I have mostly managed to control symptoms. However, after a recent urine infection/antibiotics and then internal and external thrush, I find things have worsened. Now when I urinate it really stings in spite of being urine infection/thrush free. I’ve never had this problem before with LS before. I’m pouring on cool water when I urinate which helps a little but feel very low at the moment. Has anyone else had this problem suddenly develop? Can I dab on Dermovate on my urethra and if so will that help anyway? I’m trying to drink lots of water which also helps to dilute my urine. When I went to see my GP she has now prescribed anti-depressants for “vulvodynia” but I’m loathe to take them – what do you think? Thank you again.
Just like to say thank you for the information. Diagnosed last friday(19th) and didnt have a clue about this so came as quite a shock. Had thought any pain was a hangover from stitches after each of my 3 children. Youngest is 28 this week.
i am a fourty five year old male and have been diagnosed by a dermatoligist, however his treatment recomendations have been washing with moisturising cream and 1% hydrocortisone cream to be applied twice daily. i have now been following this course for three weeks with no change in my symptoms which include a lare area of white mottled skin and little red dots on the head of my penis. should i not have been given steroid treatment? i have now had the condition for close to a year and due to pain/tightness when i get an errection my sex drive has all but given up. help addvice would be very much appreciated.
Hi STEVEN , i HAVE REPLIED ON THE MAIN FORUM FOR MEN, have a look and see what you think.
Cheers
Pete
Hi there! What a relief to find people who share some of my symptoms!! Approximately one year ago I went to my GP with soreness and splitting of the vulva. I also had a lot of discolouration and a lump-like blister. My urine was also strong and smelly. At the same time I was showing symptoms of being perimenopausal and border-line diabetic. After several visits to my GP and a Gynaecologist I was diagnosed with an ovarian cyst. The cyst later dispersed and a scan showed that I have a polyp on my cervix. I recently had a Hysteroscopy which confirmed the polyp. The Consultant said she could not see anything else that looked sinister but said she would refer me to a Vulva specialist. She highlighted that my GP should have sent me to one a long time ago! Due to the fact that I was very sore at the time of the Hysteroscopy she decided not to remove the polyp but would request that it was at the Vulva Clinic. She said it would be likely that a vulval biopsy would be taken under local anaesthetic at the same time the polyp would be removed. That was a few weeks ago and I am still waiting for an appointment. I am at my wits end and very frustrated at not being able to do anything about it. I am in constant discomfort and pain every time I urinate as the urine makes the splits on my vulva sting like hell. I am urinating frequently and constantly having to rinse myself with cold water. My vulva itches daily and is very sore. Sometimes I wake in the night itching and to urinate. I also have scaring and am unable to have intercourse. I am also suffering with back pain but I do have a prolapsed disc so not sure if this is the cause of my pain. My day to day life is miserable due to this vaginal soreness and I am very concerned. Please send me any advice you may have and how can I hurry this process up? Also, I do not want to have a local anaesthetic when I have the biopsy etc and would prefer a general anaesthetic. Is this possible? I was offered one with the removal of the polyp!?
I wrote last on July 1st. Since then I saw the gynaecologist who confirmed LS and said that some people insisted on a biopsy but he didn’t think I needed one. I was absolutely thrilled that he didn’t think it was more serious and I chose not to go for the biopsy. He also said I could be followed up by the hospital or my GP and that was up to me. He was impressed that my GP had been so accurate in her diagnosis, so that made me confident to have her do the follow-up.
She had prescribed Mometasone Furoate 0.1% ointment moving on to Hydrocortisone 1% ointment; the former being a steroid which she said had less of a thinning effect. However, the gynaecologist changed the medication to dermovate cream. The mometasone had worked like a dream and I am still free from itching now and using nothing at all.
My 2 questions are
1) Was I right to opt out of a biopsy and
2) Who’s right about which medication to use?
Barbara, in the 20th century, knowledge was such that many doctors preferred to biopsy to be sure of diagnosis and to rule out malignancy. In the 21st century, doctors are more experienced and able to diagnose LS without a biopsy. If this choice was right for you and your doctor was also happy with it, then it seems like a satisfactory outcome.
The gynaecologist who gave you dermovate cream has the right idea in giving you the internationally accpeted treatment of choice, Steroids are all about potency, dermovate is one of the highest and most effective. Hopefully it will work well for you and make your life comfortable.
Hi
I was diagnosed when I was having a routine smear and my doctor referred me on to a gynaecologist with a special interest in LS. Prior this I was foolishly putting up with itchy symptoms and had not noticed the colour changes of my vulva. I’m currently using the dermovate ointment and the itch has gone and I’m alot more comfortable however I have noticed now that one of my labia has shrunk alot(sorry if this is to much information) but am concerned how much they will shrink. My main concern though is that I’m trying for another baby and worried about use of a steroid cream and wether I can have a natural delivery as the skin has thinned and I tore badly last time. Any information regarding these matters would be greatly apperciated.
as with everyone thanks again for this site!
I was diagnosed with LS about a month ago and with steroid creams the itching has definitely subsided. Most of the comments and reading I have done have been about LS in the vaginal area but my itching has only been in the anal region. Just wondering if this happens often? I am alsowondering (and a little worried) whether it will most likely occur at some point in the vaginal area?
I got diagnosed 2 years ago by a Urogynocologist that I see for another medical problem. I had the symptoms for quite some time before this diagnosis and was in terrible burning pain. I had previously seen this Dr. several times to get some assistance regarding what may be going on. Well, when I finally did get a diagnosis and some steroids, I had already lost part of the architecture of the labia minora which has been fused into the surrounding skin by the inflammation. I have a lot of sensitivity to the clobetisol ointment and creams. It burns for hours and at times I may eventually clean it off to lessen the pain, which has become so intense. I have not been able to be consistent with the treatment and now am very worried about how to treat this as it remains very active.
Any suggestions you may have would be welcomed. I have read about testosterone helping to bring some of the architecture/definition of the skin back again. I am reading that you may not be in agreement with this finding.
I am so excited to hear back from you and perhaps get some relief and begin healing.
Thank you soooo much!!
Just wanted to say thanks for this site. I let everything go for too long before seeking help and ended up with chronic LS and the need for surgery. Yes, it wasn’t much fun for 4 or 5 days after the operation but oh the joys of getting back to a healthy and enjoyable sex life make it all worthwhile and curiously my chronic backache also disappeared – which seems most odd but who cares!
I have had LS for four years now and it’s well controlled. U find when an outbreak occurs my stance changes as walking can be very uncomfortable….. hence the backache u also experience.
I was diagnosed with LS about 4 months ago. I had a course of steriod cream for my vaginal area and a stronger steriod cream for my back as I have patches there. I always wash with Femfresh.The vaginal area seemed to clear up but has started to itch again, the patches on my back are just the same as ever, the cream didn’t do a thing for them. I have recently started with extremely, itchy eye lids and the chemist suggested it was dermititus, but I wondered if it was connected. I have not been tested for thyroid problems in a while,but I have in the past, would you recommend that I request a blood test. Any help you can offer will be appreciated.
I too was diagnosed 4 months ago, I used a strong steroid cream for and now have a milder one. The symptoms have gradually got worse and have travelled down my thighs, I was advise to use no soap products at all on the affected areas, and that also means I have to wash my hair over the bath to prevent shampoo running down my body. I use dermol 500 instead of shower gel. This has reduced the itching – I use it as cream during the day too! I was told to avoid femfresh and the like as it kills off natural defences.
Strangely enough I also have developed itchy dry eyes which the optician has put down to not producing enough tears, so I use eye drops, which help the itch, the doctor has just given me cream for one eye, which seems to be more effective. I have not read anywhere of the link, but would be interested to know if others have.
I have had a thyroid test, which was normal. I cannot wear pants which sit in my groin area, so have to wear shorts, the upside of this is, although I wear skirts most of the time to avoid rubbing, I can wear jeans occasionally, although I suffer a bit after!!!
went to see a dermatologist today – totally unrelated went for a skin cancer check up – so have a sore arm from having one froze off, but I thought he’s a dermatologist I shall ask, well i did and he did have a look, but I had to pull my bits apart he didnt even touch me!, was all abit odd nothing like a gynea appointment thats for sure.
He has put me on strong ointment twice a day externally only – but trying to look at where to put it, oh my goodness what a palarva! anyway I have to go back in 2 months so fingers crossed he’s at least treating it. and he siad its not that bad. Sue i cant have sex, wear jeans, climb up into my landcruiser without thinking about every step, run anywhere, walk alot, as it seems to chaff its all so swollen. but has given me 10 minutes amusement trying to get the oinment in the right place.
Do you know of a support group in australia?
thanks for being there – dont feel half as alone now Ive found you.
Welcome to our lichen sclerosus community on the internet.
If you find out about a support group in Australia, please let me know and I will add it on the links page.
In the meantime, there are some Australian members at the LSwomen emailing group, we would be happy to welcome you there.
Mailto:LSwomen-subscribe@yahoogroups.com to join this group.
I too have been suffering from this, for almost two years now, I’ve had a biopsy (nothing to it) and was home the same afernoon
Is there anything that actually cures it
I went back to the doctor as I’m using sterioid cream, and she said “I dont maybe its jut something you have to deal with”
I’m 57 had a hysteroctomy when I was 32 – any suggestions would be appreciated
I have ulcers that split, then I bleed, and the itching (I feel i would tear myself to bits)
If any one has any comments would love to hear
Welcome to the lichen sclerosus community.
I am sorry but there is no cure, even though people often write on the internet that they have cured themselves. This is a complex skin disease prone to relapsing and remitting, so very often it can appear as though LS has gone.
The treatment of choice internationally for LS is to use a strong topical steroid. It is not always about the steroid but how it is used. See the information in ‘the basics’ text on the page above.
If things are still not under control, see your doctor again – if you see a family GP, try a referral to a vulval dermatologist or a vulva clinic.
Hi
Well yet another newly diagnosed person who is feeling slightly nervous by it all!!! I am 41, mother of 3 kids, the youngest is 1……so feeling a bit vunerable, but feel better knowing that there are others out there and we have somewhere to share our thoughts and worries.
Hello – welcome to our Lichen Sclerosus Community. If there is anything I can help with at any time and you want to talk one to one, do ask. In the meantime, wonder if you can share with us, if you think you had LS during your pregnancy or if it came on afterwards? Vulnerable is a hard place to be, but as you have seen, you are not alone and hopefully the treatment will make life more bearable. Take care.
Hello and thanks again, at the moment I am just reading as much as I can and getting my head round whats it all involves, as with most things the more you know the less scary it becomes and the better hopefully I can handle it.
No I didn’t have it when I was pregnant, but I do remember when it started as it was exactly alongside giving up breast feeding in march of this year, I assumed it was all just hormonal changes while my body got back to normal i.e periods…but the irritation didn’t go away….thankfully at the moment steriod creams are keeping me from insanity!
I know where you are if i need you, thanks.
Hi Admin, I sent you a message at the beginning of September but have not as yet received a reply. Would be really grateful for your advice.
Regards
Patricia
I am an American marrying a Frenchman, so I live in France. I have had mysteriously painful sex for 4 of my 5 years with my partner. I am frustrated because I can not find a “specialist” in France. For example, I would like to find a dermatologist that specializes in the vagina or a gynecologist that specializes in LS. I have tried to find this, but apparently specialists don’t exist here. My gynocologist here that I have has mentioned that she believes I have LS, but she doesn’t think I need a biopsy. She also doesn’t believe in the conventional use of steroid cream. She just gives me a fatty cream to use daily. The other gynocologists that I have seen before this one I have now didn’t see anything wrong with my sex and thought I needed to see a pyschiatrist! Anyway, I want to be in America so I can find a specialist, but that isn’t possible. I have looked on forums and heard of a doctor near Paris (Creteuil) that seemed to work for others with LS. I live near Marseille. I am worried that my gynocologist I have now doesn’t know enough about LS to help me and I’m becoming more and more scarred. I’ve had biofeedback which streches me out and seemed to help a little, but, I must continue it all the time and it really only does a little. I do continue to have sex, but it is painful and I have to wait for the cuts to heal in order to do it again! Anyway, any advice? Should I insist on having a biopsy just to know for sure? Should I find another doctor? Should I insist on her putting me on steroid cream? Painful sex for 4 years is really unacceptable. I’m STILL searching for an answer. Thank you for your response. I appreciate greatly this site.
Hello Erin, welcome to the Lichen Sclerosus Community here. In the history of LS most doctors did biopsies but as time has gone on the need for them becomes less and so the right doctor with real expertise may not need to do a biopsy either.
I understand about the cuts and waiting for them to heal. I lived with that for a while myself and then had a new surgical procedure here in the UK called a Z-plasty which has been wonderful. Yes, 4 years is a long time I agree.
I have mailed you privately to suggest what I believe to be a ‘real specialist’ in France but I am not able to give out the names of doctors publically, so you will see my email. I have heard from other contacts about the non use of steroids in France but I know the person I have suggested to you in my email does use them. You may only need one good doctor who specialises in vulval disease and who realises the problems of both the vulva and the entrance to the vagina.
Yes, It sounds like a good idea to try another doctor because you have lost all faith in the one you have and that appears to be adding to your frustration.
I hope this is helpful Erin and my email to you also.
Hello,
I am 31 and have pretty much avoided sex and having boyfriends for my whole adult life because every time I have sex (it happened the very first time when I was 19, right through my twenties), I split open, and like the other lady, then have to wait weeks for it to heal.
My skin is paper thin has no elasticity at all. At 31 and after losing yet another boyfriend because of these problems, feeling completely depressed, I went to see a gynaecologist. She didn’t recognise any kind of condition, but I insisted she referred me to a second specialist. After waiting 5 months to see, her, then another 6 months to see the second, I was diagnosed with LS. I have been given the steroid cream to use every night until my next appointment (again – another massive wait of 5 months).
I am confused as I was told that the steroid ointment should help to strengthen the skin and make it more elastic. But reading these forums, women are saying that it thins the skin?? My skin is already impossibly thin! I don’t understand why it would therefore be prescribed.
I have loads of scar tissue (I also get keloid scarring in other areas of my body). I also get thrush all of the time and over recent years have dribbles of urine leakage after each time i go to the toilet. I am so fed up and lonely because of this condition. I was always sent away by GP’s and made to feel like I was silly (they used to say I wasn’t lubricated enough).
I have been using the ointment for a month and I guess i will only be able to tell if it works by having sex again. Also, I wanted to ask a bit more about the operation you mentioned as I was told I might have to have this done, but it wasn’t explained to me.
Another question is, by using the steroid cream, would this mean that condoms could be eroded by it, or without a condom, would this affect a mans penis skin?
Finally (sorry, so many questions, I know), I was told that I have a very small perineum. Apparently, people with this, are more likely to get LS? Is this right.
Even writing this, I feel like crying. I feel like I will never be able to live like a normal female, and will be lonely and unable to have children for the rest of my life.
Hi. I was so happy to find this web site. I was diagnosed for LS by a biopsy in March 2009. I am 64. It has been a horrible and depressing roller coaster ride. My GYN is good but I had a hard time communicating with her about the disorder and much was unanswered and I was at sea. Finally, after reading “The Basics” I was armed with the knowledge needed to ask the right questions. I was REALLY under using the Clobetasol. I was blaming the Clobetasol for my labia shrinking and why the whole area was so soft and mushy. Now using the cream appropriately the condition seems to be improving.
I was so depressed and felt alone. I felt like I had a social disease and this means no talking about it to anyone. Because I was afraid it might be genetic I told my two daughters (ages 43 and 42), over the phone, and said what the name was and they were to look it up but I would never discuss the issue again with them.
Thank you for this support group. You may have saved a life.
Hello Kathleen, Welcome here. You are no longer alone and I applaud your courage in letting your daughters know. I think it shows what a good and caring mum you are. They may not get LS but to have given them prior knowledge ‘just in case’ is an act of pure love. I hope that your life will improve with the treatment and that you will improve and really enjoy life from now on.
Thank you for your wonderful response. I was really feeling low and your kind words have helped. As time goes on I think I will be posting other questions and concerns as I feel I finally found the right place to gain the support I need. Also, I am hoping that if there are other women who find themselves feeling as lonely and depressed as I was feeling, they will join this discussion so we can all help one another.
Thank you for your site. It must be just about the only thing available for LS sufferers. I was diagnosed 2 months ago by my GP shortly after having my ovary removed. A few days after the operation I had a feeling of pressure and to be honest I thought I had a prolapse. The pressure got worse and I ended up always seeking out a seat with a cushion. After a really bad weekend I went to my GP who said I had LS and prescribed Trimovate, after 2 weeks of being burning sore I returned to the doctor who then gave me betnovate ointment and also a topical oestrogen cream. I am now 2 months into treatment and although the awful feeling of pressure has gone I am no better as far as the soreness is concerned. Last week I saw another GP who gave me Dermovate. I know this is the preferred treatment and I hope it works. It is so great just to share with another as this is such a lonely disease, when someone asks how I am,I can not really tell them. I was so relieved to read that some women are able to have sex once again, how I miss being close to my husband! Does this soreness ever go away?
I have lived with LS for 4 years now and what works for me is to wash my whole body with a moisturiser called CETRABEN. It is a pure moisturiser with No additives, I even use it on my face when it feels exceptionally dry.
I have been single for the past 10 years so sex, so I thought, would probably never happen again, very depressing! However, once my LS was under control I met a lovely lovely guy and we have been together for 9 months, and the sex is good! He is very loving and understanding and gentle. Being in a relationship again has taken a lot of the financial pressure/lonliness etc etc which used to cause me quite a lot of stress which also makes my LS flare up.
The soreness does go, it’ll just come back now and again and once you find something that works for you you can quickly get the soreness under control and it’ll go again.
So there is hope, I’m 53 and thought I was washed up!
Dear Admin,
thank you so much for this web page! I am a citizen of Latvia, and it seems our daughter (she is 5.5 years old now) is the only one diagnosed with LS in our country. The diagnosis has been confirmed by Israeli, Estonian and Lithuanian doctors. She has responded well to both Dermovate and Tacrolimus, but now reading about the Tacrolimus/cancer link scared us a lot.
Would you please confirm once again that steroid (Dermovate) is a preferrable treatment compairing to Tacrolimus? What about Dermovate side-effects, such as skin atrophy?
My daughter also has coeliac disease, and she suffers from awful constipations. Would like to know if constipations can be associated with either coeliac disease or with LS?
Thank you so much for your support,
best wishes from Eastern Europe
Dear Antonina,
I live in the USA and my daughter was thought to have celiac’s disease which is definitely related to bowel blockage and constipation. Getting my daughter on the right foods did help her but is still forced to take over the counter medications to help loosen the bowels. I hope this helps with your question and wish you every sucess with your daughter’s LS and other difficulties.
Hello Antonina
Thank you for your message. I asked one of the doctors that this service uses as an advisor what reply should be made to you. I was asked to reassure you that the possible cancer potential risk is likely only to apply to long term use (many years) and the same with skin atrophy due to dermovate and excessive amounts.
Dermovate still appears to be the treatment of choice in children and reports from UK doctors are very positive.
Many of the published medical papers show constipation to be a problem in children with LS. Sometimes it is helpful to work on solving the constipation problems, rather than what is actually causing it.
I have no real knowledge about coeliac disease so I am not able to comment on that part of your query.
I hope you will find this useful in helping you to make treatment choices for your little one.
I’m 32 and was diagnosed with LS nearly 10 years ago now. It was one of the most difficult things I had to come to terms with. My boyfriend at the time (now my husband) was so patient as sex was virtually impossible and I was feeling really low.
I am pleased to say that my LS is now fairly well controlled and I have managed to regain a normal sex life.
I only use emollients to wash with and like a previous person said I wash my hair separately to make sure I don’t get any soap on me.
For those people who are struggling with LS, I would like to reassure you that things really do get easier.
Hello Corrie
Welcome here to the lichen sclerosus community. I would like to say how very pleased I am that you have shared such positive news and offered a hopeful prospect to the many women who visit this site. We need many, many more kind and helpful posts from women like you, who have struggled and overcome. I too, am a woman who has wanted to offer hope and I have shared my struggles and triumphs for 16 years and it has often felt lonley to be trying to offer hope for the future to so many people, I am grateful to you for sharing.
A brand new HELLO to this lichen sclerosis community! Wow, what a fantastic website to stumble onto today.
I went to a derm specialist in May (2011) for an entirely different condition (HS) who immediately indicated that a biopsy was needed & low & behold was dianosed with LS. What’s worse is that I’ve had LS for at least 20 years but was never diagnosed until now. My clit is completely closed, my labia has shrunk and it’s moved on to the peri anal & anus areas. I’ve been on the clobetasol ointment & vaseline (petroleum jelly) and sitz baths since May. I’m told to not use sponges or wash towels but instead to use my hands with a mild soap and gently cleanse the area. I can not wear jeans (denim) and long slacks are now an issue as they too cause additional inflammation & irriataion. Due to my severe HS, I’m on an anitbiotic and a pill given to men for prostrate cancer. I shared this with my daughter and my sister for medical history purposes but it was not easy to say as both a mother and a sister. I have been feeling extremely depressed, humiliated & very lonely…it’s very nice to see that I am not alone. Thank you for creating this website.
Hi, I have posted previous messages on this site. First this site helped bring me out of a dark place and I no longer feel alone. Today I am seeking to understand this condition of LS. Is it the Clobetasol or LS that causes the shrinkage of the labia and the softening of the outer area of the vulvae? I think I am using the Clobetasol properly. Two questions: will using the cream help stop the process of this shrinkage and other changes that I have observed; and could you explain what is meant by the “finger tip unit?” Once again I am so happy I found a place to bring my concerns too. Thanks.
Hello Kathleen
A finger tip unit is a measure of the ointment that is put on the tip of the finger and extends down as far as the first joint in the finger, so roughly about one inch. Your dermatologist needs to tell you if your case needs this much treatment. In any event, any doctor who treats your for LS needs to tell you, before you leave the clinic, where to put the treatment and how much to use and how often.
I was shouted down by my derm when i asked him if an inch or fingertip amount was correct for me.He said that no ones vulval area is alike and therefore before using a fingertip amount (if that is what is said) people should definately speak to their consultant as admin says. I hope that anyone who reads about this amount of steroid checks to make sure its right for them as maybe one steroid is stronger than another, so nothing is set in stone. I only need half that amount as any part of my vulval area is not big by any means, and over time the areas requiring steroid change so best check where you need it and how much, and do not accept the use of steroid off your own back. Ask, It seems the way to go.
I believe the discussion about the finger tip unit has come about because of a recent talk by a very special and well qualified dermatology nurse consultant in the UK. She spoke about this measurement to try to dispel the theory on the internet that a ‘pea size’ amount of steroid is enough for everybody and should only ever be used. This is not the truth. The pea sized amount theory is one that has been promoted by patients interacting on forums and in other groups and possibly by some doctors who are not happy with prescribing steroids. When the LS is very active and there is a lot of itching and palor then a finger tip unit has been shown to be the most effective way of getting things under control. For the majority of people the pea sized amount for someone with extensive, out of control LS would not be effective. I am sure it was not suggested that this amount needs to be used all the time or every day forever! I agree with Anne47. There are far too many women contacting WLSS who have not been given enough information for their own case and then they search for more information on the internet and are met with a total overload of patient shared experiences and this makes them more confused. (Including me because I am a patient too!) Everyone is entitled to share but everyone needs to understand that the holistic approach is best, where the doctor and patient work together to treat in the best interests of the patient and the whole person. There is not enough of this happening at the moment and we as patients need to ask more questions from our doctors and encourage them to interact with us and make sure we get enough information for our own case. The internationally accepted medical view of using steroids is that the safe amount is not to use more than a 30g tube of (Dermovate) for longer than 3 to 6 months. However, in some cases, patients may be asked to use the steroid treatment for longer than this if they are in the 30% of people who do not respond well or have other complications and even then, they are under the supervision of a consultant, who is monitoring their use of the treatment. I hope this helps. LS is a complex condition that affects everyone differently. Never underestimate the value of steroids they often improve quality of life and prevent further disease and sometimes surgery. It is never going to be easy with this condition and so far, it looks like a ‘one size fits all’ approach is not going to be the case. Thank you for the chance to have this discussion, which is what this message is about. Be well everyone.
Hi, thank you so much for this website. It’s good not to feel so alone. I think I’ve had LS for a long time but was only diagnosed a month ago. I was prescribed dermovate which has relieved the itching. But my vagina had narrowed a lot and I havent been able to have intercourse for some time. Is this reversible at all? Does continued use of Dermovate eventually lead to the vagina widening or do I have to live with this forever? I would like to be able to have sex again with my husband. Are there any surgical options to reopening the vagina? The Channel 4 Embarrassing Bodies programme recently featured a woman with Lichen Planus whose vagina had fused and they showed her having laser surgery to open it, so I wondered if this is appropriate for LS sufferers. Thanks
Hello Carolec
You ask some interesting but very valid questions and even some doctors may struggle to give you a good reply. I will do my best.
Some people do respond to treatment at the vaginal opening with Dermovate but for many women, this needs to be accompanied by the use of dilators. It depends on the level of narrowing but probably if sex is uncomfortable then dilators can help. (I used them for 6 years, they were amazing, mainly because I had no partner to have sex with and it seems essential to keep the area working regularly.)
I saw the Channel 4 programme and the surgery. Channel 4 like to show very extreme cases. The surgery for narrowing with LS is not quite as drastic as that shown. Not sure that the laser would be used in a case of LS but a surgeon would explain the procedure to you. In the UK doctors can offer two types of surgery. One is called a Fentons procedure but there is another more up to date surgery called a Z-plasty. The Fentons seems to give mixed results and often women still need to use dilators and treat with Dermovate. I had the Z-plasty 3 years ago and it was very successful and has attracted good feedback from other women who have had it done. It was done on the NHS at a hospital in Plymouth, Devon, Uk. If you would like to know more, do mail me using the contact email form here on the site.
Hi
New to the site and what a relief to find other women out there who will understand.
I was diagnosed with LS in 2010 and treated in vulval clinic. I used Dermovate as prescribed and was discharged in April 2011 as my LS was under control. I continued to use the Dermovate twice a week as advised, but its not kept it under control. I self referred to my local GUM clinic in August as I had a thrush infection as well (after a course of antibiotics). The consultant there has been great, with regular monitoring, but even with daily use of dermovate my LS is worsening. I am now waiting for an urgent referral to a dermatologist but would welcome any suggestions on:
how to get it back under control
how to prevent further flare-ups? I’m already following all of the advice in the Basics section.
any thoughts on links with changing hormone levels (I’m 53!)?
Thanks
Hi Angela. Sorry to hear you are struggling at the moment. I really wish I could offer you something but I am not able to give actual medical advice and the best thing is to get to the dermatologist as soon as you can.
As far as I know, there is mixed evidence for hormonal triggers with LS, the doctors are still not able to tell us if this really does affect the flares or not. You need to ask all of the above questions when you see the dermatologist. I think for the time being you need to follow any advice the GUM clinic gave you. I hope the appointment comes through soon.
I am so pleased to see a website for this condition. I am 61 years old and first went to my gp a year ago with vaginal dryness and soreness having sexual intercourse. I was prescribed vagifem pessaries and then earlier this year I noticed other changes down below and was referred to a gynaecologist. He carried out vulval biopsies which confirmed Lichen Sclerosus. I was given eumovate cream and when I went for my follow up a couple of months ago I was assured that it had settled down and told to stop the cream but carry on with the pessaries. However, as I was still finding it very sore having sexual intercourse the specialist said I had a tight skin bridge on the posterior fourchette and suggested a fentons procedure. Whilst, deciding whether to go ahead with the procedure the LS flared up again and I went privately to a dermatologist who specialises in LS. She prescribed dermovate ointment and said she didn’t think I needed a fentons procedure. However, after being on dermovate ointment for 6 weeks it is still too uncomfortable to have sex. Do you know what the success rate is for fentons procedure for someone with Lichen Sclerosus? I would love to be able to enjoy sexual intercourse again.
Hello Marion
One thing I must not do is try to contradict anything your dermatologist has offered you. However, I had a skin bridge and used Dermovate for a long time and in the end I had to have it removed. I used vaginal dilators for 6 years which did help, together with Dermovate. I made the choice to endure the constant tightness and tearing and then I discovered a new surgery which I had done 3 years ago. The Fentons has a very mixed success rate and often patients need to still use Dermovate and dilators for a while. I have just shared this with another person on the messages above. The surgery I had is called a Z-plasty – it helps to stretch the skin and also I had the skin bridge removed and it can be done on the NHS – the surgeon is in Plymouth, Devon, UK. After the surgery I was back to having sex in only six weeks. So you may not need a Fentons procedure but it may be helpful to have the skin bridge removed and I think its worth getting in touch with your dermatologist or even your GP to see if you can get further advice. I am now 64 and even I am not happy if LS affects my sex life and I always feel that the sooner you can get help the better. It is hard to make doctors understand that every week that goes by is another week of our lives gone and we, as woman want to enjoy the benefits of sex in later life after all the other things we have been through with our bodies. If you would like to mail me to discuss this more you can email me using the contact email form on this site.
Dear Admin.
I was here a couple of days ago discussing my ‘clit’ had closed, the labia shrinkage and that it is spreading to the perianal areas. I feel like when I urinate, it is coming out ‘thick’ but when I discussed same with my dr., she said ‘we should keep an eye on that’. Ive had an appt since then & the dr never brought it up. I have noticed an outbreak of ‘pimples’ in the pubic area and they are becoming very itchy. I wonder, is this LS going to keep spreading and can it affect/spread to my uretha? I do my sitz baths daily and am diligent with using my medications but I get more and more nervous about this everyday.
From what I am told by various international doctors, LS is not supposed to affect mucosal skin and the urethra may fall into this category. It is possible there may be some disagreement among doctors about this. In general, doctors have differing opinions about what LS does and does not do, so your question may be one that does not have a definite answer. LS often obstructs the urethra when the labia fuse over it, preventing the flow of urine. I understand from the doctors that if LS is not treated and if it is not managed and under control, it will worsen and possibly extend further across the vulva and perianal area. Anxiety and nerves are very common and a normal reaction to living with a condition that doctors are not able to supply all the answers for. There is every possibility that there is no way any of us can have a real prognosis for the future because of the nature of LS and because it tends to affect everyone differently. I notice at international conferences, it is stated that 70% of patients will respond well to steroid treatment, which is a high number and hopefully this news will offer some comfort. It sounds as though you are doing everything possible to treat the condition. On your next visit to your doctor, why not ask all the questions that you have shared with us here and see what response you get, LS is one of a number of skin conditions that there is not enough known about or enough research. Skin is low profile (sadly) and does not attract a lot of reasearch, except in the case of Eczema, where there is always a lot going on. We would be happy to hear what advice your doctor gives you. Take care and be well. Feel free to comment or mail again.
Hi.
I was diagnosed with LS 3 days ago. I’m 29 years old. My doctor has requested a biopsy and i am waiting for the appointment. 5 years ago i was diagnosed with an under active thyroid which my doctor thinks may be the cause of my LS. It’s nice to know I’m not alone and to be able to get advice and help from people who are going through the same thing.
THANKS X X X
Hello Gemma, welcome to the lichen sclerosus community here. Yes, one of the main theories for the cause of LS is thyroid but this still has not been proven. At a recent talk in the UK a leading Professor of Dermatology stated that there may be more than one thing that causes LS. Later on WLSS hopes to include extracts from the Professor’s talk, here on the website, so do watch out for that. Maybe around December 2011. In the meantime, be well and take care.
I am newly diagnosed with LS via biopsy, of the whole body (not the genital region) but am also a Hashimoto’s patient for the last 10 years and take thyroid meds. My dermatologist diagnosed me. I have an endocrinologist for my Hashimoto’s. Do you think it is prudent for me to visit with my endocrinologist since she is an expert in auto-immune disease? I am now wondering if I am going about this treatment plan the wrong way. I really love my endocrinologist – she is very smart and spends all the time I need. Unlike my dermatologist who gives me 5 minutes. Thankfully here in the U.S. we still have ‘choice’ when it comes to choosing doctors. We are pretty much against socialized medicine. I see the posts from women in the UK and other places and sounds like it takes WAY too long to get an appt. Thank you for a wonderful insightful forum. I only wish I could read more posts from people who have LS on their torso. I am praying my LS doesn’t spread to the genitals….
Thank you admin. I understand what you say about flooding on the internet but there are and have been many times in the past when both i and i would think many others cant sleep into the early hours for fretting and worrying about our condition,and sometimes a friendly forum of patients discussing their experiences help. I must admit that my gynea said no more than a pea sized amount and only on the areas that required. I had a great deal of discolouration along my vulval sides and no white and was told to ease off on the steroisd a little and use as least as possible until the colour subsided which it did and occasionally it will come back in other places ..It is all so confusing. I will ask again what they think. I will still be reading the forums where there is interaction with other patients though, as it makes you feel less alone with others that understand you. Thank you again. Anne
Hello Anne 47. It is all confusing and forums are always at their best when they offer support, understanding and relief from isolation. There can never be a substitute for excellent treatment and information from a doctor who is knowledgeable and also compassionate and caring enough to have made sure that they are up to date with treatments and patient needs and have a dedicated passion for helping those with vulval skin conditions and a true intention to help every patient in their care in the best possible way. What is known as International Best Practice and Gold Standard. Some times a doctor is needed to ‘think outside the box’ and look at all options to help the patient. A doctor who achieves this is truly a treasure. The companionship and support of others in the same boat cannot be equalled either. Take care and be well.
I agree with you Admin…I just wish that in every area where we are all suffering there could be the doctors and consultants who had the time to think outside the box, though sadly it appears not.
take care too.Anne
Need some Information, please. I am female and newly diagnosed by GYN. I am on my 10th day of treatment with the proper ointment. My question is will the white areas turn back to my true skin color? Aside from no burning, pain and itching, how will I know I am cured from this outbreak. My follow-up appointment GYN in in 5 weeks. My skin usually heals fast from scratches and cuts. Since I have never had LSA, what signs show that I am healing?
Hello S.Jim welcome here and thank you for sharing.
I understand from the doctors that in a high number of cases, the skin often returns to normal colour after an effective course of steroid treatment but no real indication from anyone about how long this will take. In my own case it was all back to normal colour after 3 months. A remission is usually considered to be a time when you have no symptoms but you could ask your GYN if they now consider you to be under control and out of the outbreak. It is always helpful to ask about how to manage repeat flares in symptoms and what to look for and how to treat with the ointment, if the symptoms return. One sign could be that the colour starts to return, Hope you will share with us again in five weeks, and let us know how you are getting on.
How glad am I to have found this site! At 55 having just had surgery for labial fusion as a result of LS [diagnosed 18 months ago and been treated by Dermatology consultant] I am waiting to see if my condition will be improved. I recognise the despair and fear that many on the forum have voiced and can only hope that the more we all share and discuss the better it will be for everyone.
For the record I have probably had the condition since the birth of my first son, 27 years ago and have been tryng to sort out what the problem was ever since. Many doctors did not recognise the signs and I am so greatful to the female doctor I went to see who saId that she thought that it was LC and referred me to dermatology. I now only wash with Aqeous cream to prevent skin irritation and to assist rehydration, have never used biological powders/liquids and always wear cotton next to the skin
I now wait to see if the surgery plus hormone cream is successful – am healing slowly [and uncomfortably!] – would welcome any help and advice from others who have had this procedure.
Hello Geejay
Thank you for sharing here. I hope all the treatment and surgery works out well. Is your dermatologist going to follow you up after the surgery has healed? My one piece of helpful info would be to make sure you have a follow up appointment to see her.
Wishing you good healing.
Dear Admin,
I was diagnosed with LS 4 months ago. I was given the usual treatment of Dermovate for 3 months and then on an “as needed” basis. Unfortunately, this was not enough for me and I now use a pea sized amount once to twice a week. As well as this, I have tried researching other things which might help. I now take vitamins E and C for healthy skin (hopefully helps with the splitting), I use E45 cream around the outside of the vulva to try and keep the skin supple and I take a probiotic yoghurt drink every day. The change has been terrific! Sex is now possible – there is absolutely no itching and the splitting is minimal. Maybe I am just lucky but just wanted to share something I have found helpful with others suffering from this unfortunate complaint. Many thanks for this site – it has been invaluable!
So pleased to hear that you are doing well. Good news is always welcome here. Take care and be well.
Dear Admin: Thanks so much for your reply. I feel like talking in this forum is like going to your confessor. Feel great after your reply. I have another appointment with my GYN tomorrow morning. A new round ulcerated lesion showed up on lower part of labia major on Saturday. I though I would wait it out for a few days to see if it would go away. Now four days later it seems to be changing for the worst. Can’t wait for my GYNs appointment tomorrow. Thanks to this site I have learned how to “self exam” and to report these changes to my doctor right away. This is a newly diagnosed LSA confirmed by biopsy for me. Trying to lear all I can. Thanks for the support
just a quick update from earlier comment as I had a letter from my surgeon this morning who has said that there are no signs to indicate that I have LS which means I am now in remission! Also biopsy completely clear and I should have follow up visit with dermatologist [as you also advised]. I want to let fellow sufferers know that there is hope and a solution to this condition but it may take time. Do not give up!!
I am a 72 yr old woman who was diagnosed with LS one year ago. I have not been told by my Dr that I should see a gyno or have a biopsy. Instead I was given betnovate steroid cream, and a cream called diprobase. I am at times comfortable with this condition ie free of pain, but as I write this I am suffering extreme burning, I was told a pea size ammount of the steroid cream twice a day, this I do when I am suffering,but the cream seems to make me have a stinging burning sensation. I am about to make another appointed to see my doctor, but wonder if I am using the cream the way I should. It really helps knowing that there are other woman like me with LS.
Hello Megan, welcome to the lichen sclerosus community here. I have sent you a private message today but wanted to say that creams can contain skin irritants, which are called parabens (preservatives). It may be worth asking your GP to try a steroid ointment instead. The same applies to some emollient creams and the Diprobase may be the culprit. Sometimes it takes a while to find a moisturiser that works well for you and your GP can prescribe other brands to help you. Nobody needs to be prescribing a ‘pea sized’ amount as a general rule for everyone. The doctor in charge of your case needs to show you, with a mirror or by touching the affected areas, where to put the steroid treatment, he/she needs to show you or demonstrate, how much to use, and where and how often and then needs to follow you up regularly until the symptoms are under control and then explain to you what maintenenace treatment is needed to keep everything under control. It is probably good to look at the BAD guidelines which are on this page at the top (The Basics page). When first diagnosed most dermatologists recommend a course of treatment (similar to when taking anti-biotics) rather than treating as needed. This will mean using the treatment over a month or six weeks or even three months, depending on the severity of each individual case. Hope this is helpful, do feedback and let us know how you got on.
Hi admin, havent recieved your private message yet, but have read your comments on this forum. Thank you for giving me some guidence on the use of diprobase, I do think this was not helping my LS. There are times when my LS is comfortable to live with, but night time is always the worst when the soreness disturbs my sleep. also Is there anything I can shower in that will not make the condition worse. I do not feel that only water is enough to clean this area. My doctor told me to use plain soap that has no perfume added. At this time I am using my steroid cream at night, but only when I am uncomfortable with the LS. Thanks again for your support.
Hey Everyone!
So happy to have found this site, as up until today I was completely oblivious to this condition. For the past year I have had symptoms that have been continously getting worse. itching, burning, tears on my vulva during sex,burning when urine hit the skin and red, raw skin around my anus. My GYN thought I had yeast and gave me nystatin ointment and powder which only aggravated the condition. Well today I had an appt. with a new GYN and after I described everything to him, he examined me and told be he believed that all my symptoms pointed to LS. He took a biopsy and prescribed me clobetasol cream to use 3 x wk. He wants me to return in 2 weeks for a followup. I am very impressed that he recognized and wanted to begin immediate tx. I am desperate to have some relief! I am wondering, is it safe to continue sex while I am on tx? With the use of unscented lubricants, sex is tolerable.
Thank you for your advice!
Robyn
I am new here. But my doctor told me to only use Ky-jelly as a lubricant. But now he says I have to clean myself up right after sex because the KY gets sticky. My boyfriend had his prostate removed so he doesn’t ejaculate, which is probably a little helpful for me. Doctor found my LS about a year ago and I use clobetasol. I still see gyn at least every 2 months.
Hello, welcome to our community here. Doctors tend to suggest things that they like and know about but actually, you are the patient and you can choose whichever lubricant you like. There are dozens available and it may take time to choose the one you like the best but this can be your choice, you do not have to stay with KY if you do not wish to. It is good to hear that you are using clobetasol. Despite a lot of bad internet comments about clobetasol, it has a high success rate for treating lichen sclerosus. It is always comforting when your doctor can follow you up at regular intervals. It is lovely to hear from you.
I was diagnosed with LS 10 years ago. I was lucky because it was caught early before any damage was done. I have done very well over the years being on Clobetasol. It relieved any itching I had, and I only took it when I had flare-ups of itching. Lately though, I am experiencing thinning of my labial tissues which was not an issue before. I get little cuts above my clitoris and along the creases of my labia and this makes sex, especially oral sex, painful. I am perimenopausal, so I am wondering if this could be the cause of this new symptom or could it be the Clobetasol causing the thinning? Perhaps an HRT used topically could help?? I saw my doctor a few months ago and because I wasn’t in menopause yet, he didn’t think it was fluctuating hormones causing the thinning, and he didn’t see any flare up of my LS to explain it, so maybe it is just overuse of Clobetasol that is causing it?…Should I just try and take a break from it and see if that helps? I am just so frustrated because I don’t know what is exactly causing these tears…is it the LS itself, overuse of the Clobetasol, perimenopausal symptoms, or a combination?? Any ideas or suggestions would be very appreciated.
I have has the condition for a long long time, had it diagnosed about 10 years ago. My mum suffered from it too. Both of us have underactive thyroid (well that is before my mum died). After my initial diagnosis I was prescrobed Di[robase and Dermovate. I am not sure if either of them help but it is all I have. My condition is getting worse now and it is never far from my mind. The soreness is a constant reminder. My husband doesn’t seem to acknowledge the problem, thinks I have just gone off him. It is very depressing. I have heard that LS can turn cancerous. This is a bit scary as mine is never monitored by anyone, so how would I know if it was getting cancerous? I am going to gp tomorrow to ask if I can be refered to specialist again. I really hate having to nag them but I guess I will have to .
Hello and welcome to our community here. If you are not sure that your present treatment is helping and if you still have unresolved symptoms and also if your GP is not ‘managing’ your case well, then a referral is not an unreasonable thing to ask for. Try to persuade your GP to refer you to a vulva clinic or to a dermatologist who runs a vulva clinic. It is not always easy to talk to husbands and partners about the difficulties of living with LS. Perhaps a few words of reassurance to him that you still care about him would be good to start off with. When you see the consultant, ask what signs you need to look for. Regular self-examination in good light with a magnifying mirror is a good way to make sure that you are able to recognise any changes that may need to be seen by a doctor. Sometimes the early signs of cancer can be quite subtle, but generally you need to examine the vulva from the pubic hairline down to the back passage/anus, once a month. You will be looking and feeling. Look for any changes in skin colour, either to very pale or darker, any non-healing lesions or sores and any lumps. You can find out about self-examination by watching this video. http://www.channel4embarrassingillnesses.com/video/how-to-check-yourself/how-to-check-your-vulva/
Hi. Just found this site. I am 50 and diagnosed with LS 13 years ago. Always presumed I had bad thrush till had dreadful experience. My whole labia swole up and the pain was excruciating. I took a taxi to a GP specialising(supposedly) in GYN. She said she thought I had herpes which was a great shock as I had been married for some time! Was put on strong anti virual drugs, anitbiotics and painkillers. Although this helped my whole body to calm down nothing changed. I visited another GP who straight away diagnosed LS but wanted a biopsy to rule out Vulval Cancer. THe biopsy was painful(don’t think fully anaethatised) but did confirm LS. This was done by a vulvar specialist who reassured me that with treatment ( diprosone cream), the symptoms would ease. Overall I have managed to control symptoms but wish more doctors had greater awareness of LS. Vulvar specialist said I had had LS for some years due to atrophy of my labia and whitening and thining of skin. On the other hand he said there was no need for it to continue affecting my life so badly, and that he would strive to get it under control. Just hearing those words was a turning point.
Sadly I believe LS contributed greatly to the break up of my marriage as my former husband was not very understanding. I found sex painful and this led to great difficulties in our relationship.
BUT since then I met a very understanding man and am back to enjoying a happy sex life. I now use Trimovate and wash with OILATUM shower gel which really soothes the itching and help keep LS under control.
So take heart and coming from me that is someting after the years I suffered LS. Now it’s just a condition I live with. Keep yearly checks with new very understanding specialist and LS does not have that fearful grip onme anymore!
I was diagnosed with LS just after my son was born. I’ve been on Clobetasol for many years mostly just for occasional itching. I am perimenopausal at 44 (haven’t had a period in almost 4 months), and lately I have been experiencing thinning of my labial tissue as well. Is this a symptom of LS or possibly caused by the Clobetasol? I was using the Clobetasol on a couple of white spots and after a while that’s when the tears started. Then I thought I should use the Clobetasol on the tears, but I’ve heard Clobetasol can cause thinning of tissue…I feel like I’m damned if I do and I’m damned if I don’t. I’ve tried Emu oil, which helps somewhat, but I still get tears as soon as I have sex. The white spots are still there so I haven’t wanted to stop using the Clobetasol, though I am applying it less often but I’m still getting the tears. Do you have any advice on this?
Hi, I went to the GP who examined me and said that she could see it was getting worse but didn’t think anything looked to nasty. She has referred me to the same specialist who saw me last time so I will wait for my appointment.
Thank you for your reply.
Hello
I am quite new to this site and am finding it helpful but need some advice please. My GP diagnosed LS and i have been using the dermovate which is helping some areas but the labia which used to be quite large has now almost disappeared and I am now having increasing problems with the clitoris as it appears to be being pulled inside and is now also quite painful. Just above this area is a sore part that the cream does not seem to be helping and as I walk it feels like I have glass down there. I have been using the cream for almost a year now do you think it would have helped by now if it was going to work. I have also started getting a sudden severe pain on the left side sort of behind the labia. The pain is bad enough to make me stop what ever I am doing until it passes which is not long. I am confused what is LS and what might be something else. I will be seeing my GP again in a few weeks btu I am so afraid of going and being sent to hospital in case they do anything radicle just to be on the safe side. Sex is so painful as the outter skin tears but the pain is now also up inside the vagina. I feel very scared. Can LS cause problems up inside (I had a hysterectomy in my late 30s and am now 57). Thank you for any advice you can give.
Hello Jane. Sorry to hear that you feel afraid. Unfortunately, this is very common and happens when things go out of control. I have written to you privately but I feel that you need to be referred to a good vulva consultant, either a dermatologist with an interest in vulva disease or to a vulva clinic. Your GP can find a list of vulva clinics at http://www.bssvd.org.
LS is not known to give problems up inside. Very often the problems you describe arise from poor management and follow up by the GP. Now that you have some complications, your GP needs to hand you over to a knowledgeable consultant to review your treatment and offer you more information, advice and help, to get you feeling more comfortable and to see if the problems with your sex life can be addressed. I am very sad to say that poor management by GPs who are not trained sufficiently in vulva disease means that I have far too many women like you contacting the site. More awareness amongst GPs is vital for all who have this condition. Even though the majority of GPs are kind and helpful, there are some who need to learn when to refer patients on for expert advice. I hope you will feel able to ask for a referral and get further help.
I was diagnosed last week and am still totally shocked.
I went to my GP a year ago because sex had become painful – there was a soreness and stinging on one side of the vagina entrance, which had got progressively worse over a period of about eighteen months.
He did an examination, said it looked absolutely fine and took a swab, but nothing was found to be amiss. He mentioned that it could be vaginal dryness due to the menopause and prescribed Vagifem, which I have been using for the past year, but they have made no difference at all to the soreness.
In desperation I went back and asked to be referred to a gynae as the soreness had got worse and the skin was very tender and splitting at the front part of the vulva – noo sex at all for the past 7-8 months. I was convinced it must be vaginal atrophy brought about by the menopause.
I had a colposcopy examination and gynae said the cervix and inside of the vagina were absolutely fine and the Vagifem had done their job. However, what was going on outside on the vulva was another thing altogether and the area was very inflammed and some of the skin had actually fused together.
He sent me away with a cortisone cream, but not one that I have seen anyone else being prescribed – it is called LOCOID – and I have to use it for the next six weeks and then go back again for another examination.
Please, does it ever get better? I had not anticipated having to give up sex entirely in my mid- fifties. I had a hysterectomy nine years ago after having severe pain for a long time leading up to that and had just started to enjoy sex again.
Hello and welcome to the community here. You ask if it ever gets better and if it is treated appropriately by a skilled doctor, then yes, it can and does get better. What happens is that LS is known to be a relapsing and remitting condition. When treatment is successful, long remissions can be achieved. Locoid appears to be a fairly non-potent steroid and the treatment of choice is Dermovate. Many dermatologists use Dermovate either in accordance with the BAD Guidelines or twice a day, every day for three months and then reduce gradually to a maintenace treatment. In a recent talk in the Nederlands, one doctor stated that he treats once a day, every day for two to three months, with Dermovate. It is not always about what you use, although Dermovate has around 70% success in men, women and children, it is about how you use it – how often, how much and often ointments are more effective than creams. Never say die, with your sex life, many women enjoy a good sex life once the symptoms are under control. I hope this helps, if you are not improving by the time your six weeks is up, ask your gynaecologist to review your treatment regime. Would be pleased for feedback and to hear how you get on.
Hello and thanks for the quick reply.
I was a bit concerned about your comment regarding Locoid cream and have just re-read the leaflet that came with it.
It say that corticosteroids come in various strengths – mild, moderate, potent and very potent and that Lucoid is classed as potent.
Must say that I find it a bit confusing as to why gynae didn’t give me the Dermovate if this is the most commonly prescribed treatment, but unfortunately I am stuck with the Locoid now and just hope it works.
Have had more of a sore and stinging feeling over the past day or two, which is a bit worrying, but nothing too bad. Perhaps it gets a bit worse before things start improving and I am only day six.
Spent some time looking at various sites on the internet this afternoon after receiving your message. There are many disparities in information depending on which country in the world was giving the information but mostly I found Locoid described as a low to mid potency cream. I am sorry that you feel confused. There is no real substitute for the advice of your gynaecologist and if you are concerned, do phone his/her secretary or nurse and ask them to put your mind at rest. You could mention the sore stingy feeling as well and see what advice you are offered. Dermovate is described as being ‘super potent’ and often non-dermatologists are wary of prescrinbing it and this will be the personal belief and preference of the doctor involved. Sounds as though it is best to ask your gynaecologist.
I have just been diagnosed by a gynaecologist after 18 months of symptoms. During that time I was treated with HRT creams and pessaries in the mistaken belief that this was a menopausal problem. I have begun treatment with dermovate. I haven’t really discussed my diagnosis with my husband. I’m hoping the dermovate treatment will work and I will get back to enjoying sex. Our sex life has never stopped – it’s just become a lot less frequent. Apart from this site everything I have read is quite extreme. I have every reason to hope I will manage this condition. Do you think I really need to make my husband aware of something that may make him terrified to touch me? Has anyone else found this to be a dilemma?
Hello Kate. I had just divorced and started a new relationship when my LS was diagnosed. My new partner was OK about it and was patient and kind at times when the symptoms made intimacy less available but it was still difficult to explain everything to him.so I have some understanding of your concerns. Dermovate can be very effective and I owe my own sex life to it, I doubt that I would have endured 16 years of living with LS and still be able to have sex, without the treatment with Dermovate. It may be a case of waiting for the right time to tell your husband and that time may not be right now. You could consider giving yourself time to come to terms with the new diagnosis yourself. and settle down on the treatment. Nothing about living with LS seems to be easy but there are so many courageous, wonderful women (and men) who find ways of dealing with all the challenges, your confidence and hope in managing this condition will sooner or later help you to find the right approach for telling your husband when the time is right. It is true that there are a lot of extreme cases on the internet. One thing I have found is that when people with extreme cases do find help, they do not often come back to a forum or message board and spread good news! Although I think we have a few here who have been kind enough to share their good news. I am one of them and have been for 16 years, I know how important it is to try to make a more balanced view of this condition to take some of the fear factor away for newly diagnosed people like you. There is life after a diagnosis of LS. I hope you will keep us posted on your progress.
Thank you for your kind words. I’ve opened up a dialogue with my husband. So onwards with treatment. Hit my fist GP problem…… My GP won’t provide a repeat prescription as “steroid cream shouldn’t be used long term” I’m confident your site has provided me With enough information to challenge that when I need to. Ive been prescribed cream, now I’m wondering is the greasier ointment a more preferable option, or does it not matter?
I was so happy to have found this site. I have suffered been a sufferer for about 15 years. I live in Spain but when I lived in the UK I was seen by the hospital every 6 months. I was prescribed Dermovate by my Consultant and it worked very well and attacks were rare.
On my arrival in Spain after the initial examination they found a small lump and this was instantly removed. It was benign. I was then given a new cream called Protopic 0,1% Pomada. This I have to say was very affective for approx. 5 years but in the last year it did not seem to work and the itching and soreness came back. My sex life has been non existence for a number of years.
I have just been for my yearly checkup at a clinic rather than the Hospital and they after listening to my concern and unhappiness changed my medication to Colpotrofin and Vagifem 10 micrograms. I have to use the latter first do 18 days one each day to be inserted into my vagina and then twice a week till finished. Then move onto the Colpotrofin. They have given me hope that this will also help with my sex life, and seemed surprised that I had not been given this treatment at the Hospital. Needless to say my Husband is over the moon…..! Can you please tell me if you have heard of this treatment and why I have not been given it before.
I was diagnosed about two or three years ago. I had suffered since about 1990. I had constantly been given Canestan until I attended a Gynae clinic where I saw a dermatologist and obs & gynae man together. Not my least embarrassing moment. I too was prescribed Dermovate twice a day for 3 months and on an “as needed” basis thereafter. I was told to ignore the notes saying that it wasn’t to be used for long-term use. I probably use it about twice a week on average, making sure it covers the inaccessible areas. I was also prescribed Cetomacrogol to wash with and avoid all soaps, shampoos, E 45 or any other creams. I now wash entirely with the Cetomacrogol and only get slight soreness when I forget to use the Dermovate. I am immensely grateful to the specialists who saw me and, although they thought I had a severe problem, it is now manageable. That is the best one can hope for. The inner lips have disappeared and, short of a miracle, won’t be coming back. However, I manage. My husband gets rather glum but, with Vagifem, my sex life is just about alive. Until I was diagnosed, sex was inordinately painful and eye-watering, so it didn’t happen. That doesn’t make for a happy relationship. After the 3 months, things are possible and touching may not be a problem. Husbands do need to know about these problems. They need to know that it is not contagious or sexually transmitted. They told me that it was probably causing by tearing in childbirth. The Cetomacrogol seems to prevent athlete’s foot and heat rash as well, which is a nice. My doctor happily prescribes all these and other requirements and I come home from the chemist swinging an embarrassingly large bag of stuff. The specialists told me not to look at the internet, which of course I did and scared myself silly – but I consoled myself that my case wasn’t so bad.
I hope this is of help to someone.
Hello, I’m a 21 year old female who was diagnosed with LS almost a year ago. I’m so happy to have found this site as people try to understand what I go through but really can’t. Steroid creams work to control my itching but lately I have been worried about the reddish colour of my vulva. I was reading about drinking red clover tea and wondering if this has helped anyone? I can empathize with many comments on here as my three year relationship ended a lot due to this disease. He was really good about it but I didn’t know how to deal with the pain a lot of the time and starting not wanting to have sex at all. Consequently, intimacy problems developed and I lost a lot of my desire. I worry if I’m ever with him again or another guy that I will continue to have intimacy problems, any advice on that and how to reconnect intimately after going through this? As well I thought I should mention pelvic floor physical therapy to everyone. This has helped me and my fear of my vagina totally closing up. You can do it on your own and helps your vaginal muscles know how to relax and makes sex a bit easier
Kate, I have been diagnosed with LS almost 10 years ago. I am very surprised that your GP won’t provide a repeat prescription as I have been undergoing treatment with Dermovate for 10 years and this was prescribed by my Dermatologist. I suggest to visit dermatologist and I know for a fact thet LS need to be controlled by 6 monthly visits to the doctor. I recently discovered shower gel from Laroche-Posay, Lipikar Syndet which helped me to control this terrible disease. It protects against hard water, soap, fragrance and paraben free gel and I noticed shrinking in the area affected by LS. Altogether with Dermovate the area looks almost normal. Try this and certainly go and visit your dermatologist and ask for referral to LS specialist. Good luck.
I am 64 and just found out that I had lichen. It appears my clitoris is buried under skin…and this happened rapidly. A few months ago I was normal. From what I have read, it will remain buried? This is so surreal to me. I had never heard of this disease before…no one had eve educated me on the subject.
I went to my gyno here in the U.S., and he called it atrophy. So I looked online and read about ls. So I called him and he said yes, that is what I have. He prescribed crotamiton 30percent/betamt 70 percent. .1pcent. Apply every night for two weeks, then every other night for two weeks, the twice a week for two weeks, then once a week forever. Since it is a .1percent cream…..is this enough, do you think?????
I am shocked at how quickly my clitoris was covered!,,!!! I still have feeling there, But I never expected something like that…
ANYWAY, please let me know how much cream to put on the labia and clitoris area. I have been slathering it on generously each night.
thank you for your help and advice.
can anyone recommend a doctor in the U.S. (preferably in the Washington D.C. area) who has expertise in managing lichen sclerosus. I need someone knowledgeable about alternative treatments to clobetasol, as it is negatively affecting my mood.
has anyone had experience using an alternative to clobetasol, such as tacrolimus or retinoids? I have active l.s. & clobetasol is negatively affecting my mood.
The above is a generic formula prescription that was made for me. My gyno actually prescribed Eurax 30 and Valisone 70 per cent in a .1 per cent cream.
I am angry that women are not educated in this the same way that we are educated to examine our breasts. I am so angry that no one told me to examine myself ESPECIALLY after menopause!!! I wil be educating the daughters in my family. I am angry that perhaps I could have saved my clitoris from being covered if I had only known about this disease. My gyno said I showed no serious scarring…..how can he say that when I later noticed it when I got home from his office? He also said this did not lead to cancer of the vulva….a.but I have read online that it is a slight possibility…so I need to continue to examine myself. How often do you think I should examine myself???
I know I have a lot of questions in my last two comments. thank you for helping all of us. I did haves sex with my husband last night after trying to heal for 6 weeks. it was enjoyable…but I slathered my vulva with Astroglide morturizer and I use Replens in the vagina tp prevent friction.
I am not completely healed yet from my sores..but it is getting better. BTW, my gyno is highly respected and very experienced. but no doctor knows everything and we know our bodies better than they do….so we must be proactive in our treatment.
Hi, I was diagnosed in October after symptoms arose only a few weeks prior to my doctors appointment. I was then referrered to a gynaecoligist who confirmed LS & continued with my treatment of Dermovate, which I had been on for 2 weeks. I have since returned to the gyny for a follow up appointment after 5 weeks, I was fine, well it hadn’t got any worse til the 4th week then my labia’s started to shrink & I am now having trouble opening my bowels, I bleed & find it uncomfortable too. My areas of white have increased & this was all within 1 week. When I visited gyny I was expecting a biopsy as they said I would have one if it hadn’t improved, bt I hav been put on an Oestrogen cream to use alongside the dermovate for 6 weeks til my next appointment. Then they will do a biopsy if there is no improvement. I am using laxatives to aid me passing motions. Its all been very scary the last week or so, I was kinda coming to terms with LS until it started taking away my parts!! & affecting other areas. I have also been given dermol lotion to wash with & use as soothing lotion in day, to not go swimming & to wash underwear in non-bio. I am having bad days & good days & sometimes just want to sit & cry, but it won’t beat me. I have done some exercise 2nite, I know cycling is usually advised to be avoided but I have been jogging for 10 minutes tonight, I hope I feel ok tomorrow & not sore, does anyone else manage jogging / running??
Hello, I was diagnosed with LS about 3 mths ago after 2 1/2 years of being told it was thrush. I have struggled in getting it under control, I’m currently off work with a skin infection, the second in the last 6 weeks (previously off for 3 weeks) luckily work is very understanding but this isn’t easy to talk about. Dermovate seems to work the best for me although I’ve been given other potency creams to use but not to much effect & dermol antimicrobial wash/cream. At the moment I don’t really understand the condition, but I hope I’ll be able to have an intimate relationship with my partner again, and even wear a pair of jeans or do I need to start investing in lots of skirts? I don’t understand what causes a flair up either or is there no cause? Is there anything I can do to help myself, the redness, soreness & stinging is really awful. It also makes me anxious about going away with work or just for a day out incase it starts to hurt.
Can anyone tell me what information they have received as to the difference with LS between the normal known white areas, itching and soreness, to the ruby red discoloration and navy lining or small bruising marks, that i seem to have surrounding my vagina and /or/ sometimes i have it along the sides. After a while with my medication the redness goes away but then returns at another point. Is this a more virilent LS or a slower moving LS. I have my symptoms under control with ,now,no white area and no soreness/itchiness as long as i keep up daily maintenance of the area. I did not have larges labias so have no fusing but have now got a completely covered clitoris, but the sensations are still there
I have the same symptoms. I left a lengthy description a few days ago, but have not heard from the admin. Maybe I did something wrong in submitting it?
Anyway……I have just started treatment. Like you……my clitoris is covered. But I have sensation. So it could be worse.
Hi there Pearlseeker. Thank you for replying to me. I have been trying to find out which is the more virilant and can it be tackled differently, but to no avail. I think there is a lady on another sites message forum who also suffers like this so i might try there. I think you can email on here to admin one to one, i think the lady is very busy but you could try.
take care Anne
Hello Pearlseeker, I have searched but cannot find your original message. Mail me off the site at admin@lichensclerosus.org and send me your original message and I will see if I can help you.
Hi to anyone whose reading this , I’ve had LS for 12 years now ! I’m under a consultant at my local hospital who gives me yearly checks to make sure nothing bad is occurring , I use Demovate ointment (the cream made my symptoms worse ) .
I started with constant itching around my perineum & I thought I had thrush but it wasn’t it was LS . Over the years it has spread all over but I manage my symptoms with the ointment, I just wanted to try & reassure people out there that you can get through this & my best advise would be if your not already under a specialist that knows all about this condition insist your GP refers you to one !
I could go on forever about this but anyone wants to chat about LS then dont hessitate to reply
Regards
Louise
Ps I’m 39 years old I’ve had this since 1999
I am 30 years old and was just diagnosed with LS last week by my Naturopathic Doctor after really having symptoms for years which was very thin skin that would split sometimes and constant itching but now I developed a painful lesion which urged me to make an appointment.
The steroid gel I was prescribed hurt so much when applied and made my symptoms worse.
My vagina looks like a war zone right now with lesions, a swollen clitoris and a huge white blister looking thing.
I am waiting impatiently for my doctor to call me back.
I am so sad right now and am worried about how this disease is going to affect my life. I have four young children to take care of and we recently moved far away from all of our family. My husband and I usually enjoy an active sex life.
I live in a very small town and I am sure there are no specialists in LS around here… not to mention I am currently uninsured to boot.
~Maria
Hi, I’m Marcia, I’m 43 years old, and I’m from Brazil.
I am an acupuncturist and an esthetician and LS have 10 years. I was diagnosed by biopsy confirmation.
After using steroids for several years I’m taking care of LS with the laser frequency and low-level laser acupuncture. The result will post for those interested. There is no itching, and skin is more pigmented. I’m also drinking lots of water to help in treatment. The lichen is that I have extragenital presentations.
Spread to my breasts, chest, back, inner thigh, neck, abdomen …. I’ll be using hydro ozone therapy as a bactericide and fungicide to aid in treatment.
It has a group of people here in Brazil I will be publicizing this site.
Hello Marcia, welcome to the LS community here and thank you for sharing with us about your own case of LS. It is of interest to me, as this year, I was diagnosed as also having the extra-genital kind of LS and I find it much more challenging to get under control than the vulva kind. There is not very much information on extra-genital LS and so we would be pleased to hear from you as to how you get on with the treatments you are using. Kind wishes and Happy New Year. Fabia.
Hi my name is Sue and i am 60 , Iwas diagnosed with Ls about a year ago, I had been treated with HRT cream as my GP thought the soreness and itching were to do with my age. As the cream did not work he came up with LS he gave me a mild steriod cream and told me to apply twice a day until i felt better and then about once a week. Just before Christmas it all became unbearable I went back when he prescribed clobetsal cream and said i needed to go back in about 6 months. I have white patches on my skin, my clitorisis is so painful and sore. when I use the cream my skin turns blood red. I just dont know which way to turn im so frightened after reading stuff on the internet. I just dont want to appear to be a nusiance
Sue
Hello Marcia, I too have LS of the torso: arms, breasts, abdomen, legs, back, inner and outer thighs, ankles/tops of feet. I live in southern California and would LOVE to know more about laser frequency and low-level laser acupuncture and whether or not it’s available in the U.S. I am almost 55 and post menopausal 10 years. I was diagnosed via visual inspection by a dermatologist and a skin biopsy. The itching is completely unbearable as is the ripping skin sensation all over my body. Miserable I am! I wish to hear more about homeopathic ways to treat this. Thank you and I will be watching for your results.
Hello All,
My daughter was diagnosed with LS at the age of 7 .She is now 12 and a half and finds all this excruciatingly embarassing.
Do any of you have any tips as to how i can make sure that she does her treatments and checking?
Mo4
Hello Mo4. Its always hard to hear of another young one diagnosed with this. I expect we can all remember being 12 and finding everything about growing up and being a woman was very embarassing and having LS on the top of it is really challenging. I know so many good dermatologists who treat young girls and sometimes advice about future care and the importance of checking and using treatments comes best from the doctor. I can only suggest that you try to offer your daughter the view that every part of her body is important and that skin everywhere on the body needs to be cared for – not just make up and fun things but all of her skin. That in her case, becoming a woman means extra attention and checking and treating is a good thing, not just for her but for every woman. Sometimes it is not easy being a mum – I hope this helps a little.
Thank you for creating this site. I gave up looking for info along time ago because there wasn’t much about.
I was diagnosed by biopsy 16 years ago, after suffering for a year with constant itching, split skin, pimple like spots etc… My GP at the time didn’t know what it was, he tried many creams and antihistamines. It took 6 months to see a specialist who immediately done a biopsy. I was given Dermovate which after some time got it under control, was then tried on milder steroid creams but it got worse each time, eventually back to Dermovate. Was seen at a special clinic every 3 months for 3yrs, eventually was given Dermovate ointment & Oil-a-tum plus for the bath, this eased the condition. I continued to attend the clinic every 6 months for the next 9 yrs, the last 3 yrs have been yearly. Unfortunately my husband was not understanding. Sex was painful and to me became not worth the suffering, I became celibate 12yrs ago. I am divorced and have not had another relationship. This condition has been a thorn in my side for many reasons, especially as very few people know of it and don’t understand how it interferes with your daily life. Just been to the clinic recently, and been told that I am unfortunately one of the rare cases, that the condition is permanently active and just has to be controlled. I am only 54 now and going into menopause, which I’m now told could make it worse not better! I know myself the condition always got worse the week before menstruation. I also have polycystic ovaries. Was gestational diabetic in last pregnancy. Was advised in my 20′s not to take the contraceptive pill as I had constant bleeding. I did take the pill after this advice and haemorrhaged, was found to be pregnant with twins and lost one.Had problems with the coil that I endured for 8yrs, before the doctors refused to allow me to have a coil again. Kept getting irritations with condoms, also tried the cap but the irritation got worse. Had my 3rd child at 35. Last pregnancy at 39 but due to complications lost the baby at 10 weeks. Was also diagnosed with Adenomyosis 2 yrs ago. Would be interesting to find out if others had similar conditions before or after diagnosis.
I joined this forum because in November 2011 I was diagnosed with LS and put on Betamethasone which is a cortisone cream, told to use it twice daily by the Gyn and told I need to see him every six months. When asked why I have this condition there was no answer same as the skin specialist who I also have to see every three months. I had itching all over but now after the treatment just have white patches on my body with the exception of my arm which has a faised purple patch on it. When told after a biopsy I sort of went into shock thinking what now. I look it up on the internet which sent me into further shock but now after reading everyone else that has it I feel so much better. Thanks so much for sites like this. I am 62 and just sorting out how to navigate around the internet so hope you will bear with me as I learn how to use a site like this one.
Hello spmc. You are doing very well with learning how to navigate the internet. Nobody knows why lichen sclerosus happens and every doctor has their own way of either answering or avoiding the question of ‘why do I have this’ – it is still a mystery and there is a lot of speculation all over the internet. When I was diagnosed in 1994, I chose to make sure that I kept the discomfort under control and have a good quality of life and this is a good plan. One day, someone will find the answer for us but in the meantime, we need good doctors with lots of care and kindness and expertise to keep us comfortable and enable us to have a good quality of life. I also have this problem on my arms and leg. Be well spmc.
Hi, my name is Jade and I am 20 years old. I have recently been diagnosed with genital herpes which I find it hard to believe as my partner and I have never been intimate with anyone else. Over a month ago, I developed lumps, lesions and blisters ”below” and it was so painful to urinate and move about. Even now I am still am red around my vagina, have awful discharge and itching. At the time of the sores, my clitoris was completely swollen and I had pains in my lower abdomen. I also continually break out in rashes on my arms and lower back, and before this I never had any skin problems. Also, I have trouble with bowel movements usually ending in bleeding when I do go and I can still feel pressure when I urinate. Could I possibly have LS or are we just an unlucky couple?
Please help, thank you!
Hello Jade. Sorry to hear about all these problems. There are all sorts of things that can happen to the vulva that are not LS and it would be best to try to get medical help and a diagnosis of what is causing the symptoms, they may not all be related to herpes, but someone could explain more about it to you. There may be more than one thing going on in that area. You do not say who diagnosed the herpes? Sometimes vulval conditions are misdiagnosed as being herpes. The issues with herpes are not always about ‘catching’ it in the way you describe and there is an excellent support group, here in the UK, who may be able to help you http://www.herpes.org.uk/ Sadly, this site cannot tell you if you have LS or not but your GP can refer you to a dermatologist who runs a dedicated vulva clinic. A list of some clinics can be found at http://www.bssvd.org
Anyone who has problems in this area of the body is ‘unlucky’ but in your case, there may be a lot of help for you and the possibility of getting well, it is all down to finding a good doctor who will make thorough examinations and tests and who is knowledgeable about vulval disease. In any event, you deserve to find the best of treatment so that you can live a normal happy life with your partner. Please come back and share with us, as to how you get on.
hi…. well my story is very similar to a lot of yours i’m 41 i started having symptoms of LS 12 years ago and spent 5 years been misdiagnosed with everything from herpes to bad case of thrush (which i do suffer from chronic thrush) and when i had done my own research and suggested i could have LS i was told i was too young to have it as it only effects older women !! luckily one Dr did listen to my sobbing rants that, “yes i was in pain, no i didn’t think i had herpes and i couldn’t live like this anymore” and quickly sent me to a wonderful gyno that listened and said that he suspected i was right i did have LS and to confirm this i had a vulvar biopsy
i then started on a steroid cream which changed my life for the better!! i only use it now if i have a flare up but with the cream its under control within days i saw my gyno every year for four years till he thought it was dormant and i have had three wonderful years of a couple of flare ups and nothing much else …..until today
itching back ..splits in skin… white patches and black spots ? but saw a great Dr who said yes LS is back and also diagnosed stress incontinence which is not helping and i feel is making it worse hopefully medication for this will help
thanks for a great website i think nhs should prescribe this !!!
My little girl has been suffering from LS for almost 4 years, she turns 6 in July. Her valva has almost sealed up completely and we have just finished 4 weeks of Dermovate and a week of Trimovate which has had no effect. We are due back to see the dermatologist in May and was wondering if there was anything i should be asking for.
Hello Emma. Sorry to hear about your little girl. This is a lot to go through in one so young. I hear a lot of talks by the medical profession on LS in children. It seems that using a hormone cream can sometimes be successful in unsealing the labia and I think the treatment that was mentioned was Ovestin. It is possible that your dermatologist has tried the steroid route first to see if it would work and he/she may offer this treatment as the next thing to do. I am due to be at a medical talk in late May, where one of the UK’s experts on childhood LS will be speaking about it but this is going to be too late to be helpful to you. May seems such a long time to wait for another appointment. I wonder if your dermatologist could see your daughter sooner if the current treatment has failed and as her vulva is now almost completely sealed. I wonder if it is worth phoning the dermatologist’s secretary to see if the appointment can be brought forward? I am happy to mail you/talk to you one to one, if this would be helpful. Mail me at admin@lichensclerosus.org
In any event, please update us if you are able to, and let us know how the appointment goes.