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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. I was diagnosed a year ago with LS, but everyone has talked of Gynaecologist referals so how come I ended up in Dermotology? She also refused point blank to allow me blood tests for hormone levels. It must be just about the only thing available for LS sufferers. 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. The diagnosis has been confirmed by Israeli, Estonian and Lithuanian doctors. Any suggestions from anyone suffering similar symptons would be gratefully received.

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The main problem is that patients are not given enough information to help them use their treatment effectively and safely. Avoiding wearing jeans till you have the symptoms under control is a helpful thing, but I so understand how inconvenient this can be! Try reading the article here http: I was recommended to use an emollient wash cream soap free, non drying, no perfume known as E45 Wash and this is soothing and gentle to use and makes me feel cleaner than just using water.

I often use some E45 cream thicker than the wash cream and leave that to sink in. I was on antibiotics for acne on and off for 10 years. When I stopped antibiotics was when sex became too painful. I do think there is an antibiotic link. The antibiotic may have cured the bacterial vaginosis. I noticed the date you posted this and I hope by now things have gotten better for you.

I was diagnosed in and I am 66, will turn 67 next month. It was too painful and I was scared. Finally, two weeks ago I was referred to a urogynecologist that treats LS. She was great! I explained about our sex life, so I started dilation today. I am hoping this will restore our sex life to some degree. I really like this doctor. This doctor is the first one I can actually trust and is very knowledgeable.

This site seems very practical and reassuring. The steroid cream has improved my condition beyond all recognition. I feel angry though that we women are so ignorant about vulval self examination. None of my friends was aware that this was important.

Ignorance is decidedly not bliss in this case. 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!.

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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?

Help is this normal? How do you know if you are reacting to the creams etc with this problem? Sorry feeling low. 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.

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. Best of luck to all. 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. 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. 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. 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.

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? Hello Ian, I know we do not often get messages from men but you are welcome here and there are other men around.

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.

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. Cheers Pete. Thanks for all the info. She also refused point blank to allow me blood tests for hormone levels. 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. Do you think I should go down the biopsy route? Kind regards, Jill. Hello Jill. None of what you say is easy. 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.

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. There are worst things in life. Be strong. Find out what you have and cure yourself. I hope this was helpful.

Jill, I was recently diagnosed with LS of the torso, arms, legs, and breasts. I was spared the genital region who knows if it will spread. I am in process of looking for a homeopath and also, 54 and post menopausal. So I have TWO doctors weighing in on my problem. I asked for a skin biopsy to diagnose LS before submitting to all the steroids and antibiotics. My biopsy was positive.

My derm doctor also ran tests for lyme disease, scleroderma, MS, and other worrisome diseases — all were negative. With my LS, my entire skin feels like it is ripping and tearing when I have normal movements of arms up over head, or sit-ups, and the itching is unbearable all over my body.

I take antihistamines at night along with melatonin to get good sleep. I think you should go for the biopsy to rule out what it is so you can get the correct treatment. Hang in there. I am newly diagnosed and my husband has stage 4 colon cancer. Do you think stress has a lot to do with it????? Most auto-immune illness are exacerbated by stress.

Surprise, surprise. On a brighter note, my husband got good news at his doctor today — the latest scan revealed no further spread of his cancer. Maybe my LS will get better too…. 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. Any advise on how much to use??? Like I said I am thankful I found this website and am anxiously waiting for feedback. 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. I have had LS for about 10 years now I am 63 years old. I use clobetasol propionate as per the guidelines, for all washing of the area I use Boots Aqueous Cream as an emollient.

I was advised also to apply White Soft Paraffin BP after washing, how ever I cannot find any other references to using soft paraffin. Is the continuous use of soft paraffin advisable? This past year I noticed the outside vaginal area definitely looks better but still has white strips. The inside — not just the outside — seems to be the problem. My GYN just gives me the outside steroid cream.

I was diagnosed with LS 5 days ago and am very grateful I have found this site! I look forward to your website being reopened and to be able to get in touch with other people in the same situation as myself. Hi, My doctor referred me to a dermotologist as I had white itcy patches on my Vulva.

I just had my biopsy a few days ago and should get the results in about 2 weeks. My consultant thinks i have LS and i am very worried alos praying it is nothing worse. So if i have a steriod cream will my white patches disappear? I am awfully worried that i will not be able to control my LS and this scares me. I am only 30 although i have read it is more common in post menopause women.

Also would having LS stop me from having any more children? Also is there any more symptoms that come with LS as i have noticed a lot of vaginal dicharge, could this be linked? Does this mean i have more, possibly, worse symptoms to come? I am so happy to find this site!

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. I have been misdiagnosed by so many doctors, nurses, etc. Are there other conditions out there that mimic the symptoms of LS? Thanks again for this site.

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. 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.

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. 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. It was very informative and now I feel more confident about asking questions the next time I see my PA.

Especially with all the crazy stuff on the internet nowadays. This was very helpful, thank you. 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.

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.

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. Once again thank you soooooo much. Im in so much discomfort every damned day — the cream can I use it internally? My Gp is very sweet but pretty useless, my gynea dosnt know whay Im so miserable, I need to find a vulva specialist here in Perth australia.

I am so glad to have found this site, I was diagnosed with LS in march and although I had a feeling that that was what I had it still came as a shock. My problem is coming to terms with it and to stop checking that it has not turned cancerous caused by my anxieties. It is well managed by an every other day application of Dermovate and am due for a review in November.

As I have a daughter of 28 I am worried that it is hereditary as I do not want her to get this. I did not need a biopsy at the time of diagnosis as it had responded well to the treatment regime, although a little redder at the moment, could that be my stress levels or the warmer weather? It is good to know I am not the only one with it and that some people have had it for a long time and are still fine.

Sorry I am off to the doctors later to see about my anxieties before they take over my life. For a while I have been feeling that my life was over, my husband has been so patient and is now celibate because I am too scared to let him near me. Thank for reading this. I have just found this site and am very very curious as to whether or not I may have LS.

Intercourse is not always painful, but the pain does happens frequently. When I swim in chlorinated pools, the outside and opening of my vagina are very dry, sore, and sensitive. Exercise running often causes a ripping feeling in my vaginal area. The only things i have found to help are hydrocortisone cream, acidophilus inserted vaginally, and hydrogen peroxide douches which hurt at first and then relieve pain and itching.

Recently, my upper arms have begun to lose pigment in blotches, and the skin looks thinner. Ive never had sores or anything, but my vaginal opening seems smaller, and the skin seems lighter. Also, a possibly related symptom: Weird I know: I have suffered with LS for more than 5 years and i seem to be one of the unlucky ones where the symptons persist almost permanently.

I have had repeated trips to doctors and gynacologists but the treatment never changes and I have to suffer the constant burning, itching, split skin and placques of white ulcers….. I recently had two large lumps come up and immediately went to the doctor who said they were abscesses caused by my immune system attacking the hair follicles, I am now suffering huge swathes of spots and rashes on the iside of my thighs and though this migth sound silly, the skin under my arms keeps going a dark colour and looks very crepey….

I am again waiting to be referred to a gynacologist for her opinion but I have to say I am very very concerned and am getting very depressed and weepy with this constant problem. Any suggestions from anyone suffering similar symptons would be gratefully received. Thank you for your direct reply to my email.

I think I coudl cope much better if I knew i was going to have a decent break between outbreaks. Does this terrible condition not concern any of the medical research people? Does nobody apart from us sufferers realise what a dreadful life-defining condition this is? Life really does change for all of us and I would just like to think that somewhere ahead is a light at the end of the tunnel.

It has helped a great deal reading other comments from sufferers and knowing there is a web site where I can rant sometimes, take a deep breath, and then get on with it! Hi everyone — how lovely to have a chance to share with people who understand! Thanks to Dermovate I have mostly managed to control symptoms. Has anyone else had this problem suddenly develop?

Can I dab on Dermovate on my urethra and if so will that help anyway? 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. My Dr has diagnosed Ls ,and sending me to gynaecologist for biopsy.

The thought of a needle down there sends me into a nervous wreck mode. Is it that painful? I have been using betamethasone valerate 0. I have also been given hrt internally now. My Dr says just use the emollient washes and stop using the cream. Has anyone used sweet almond oil with any success?

I must say my Dr is very good. 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 am 78 and was diagnosed about 10 yrs ago. The best relief I have felt is to use wipes containing aloe Vera, and when in agony after urinating at night, applying Aloe Vera gel, obtainable at Holland and Barrett gives almost instant relief. I also use it on the splits around my vulva, and feel it is safe and a natural product. Hope this helps.

I wrote last on July 1st. 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. 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. 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.

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. Any information regarding these matters would be greatly apperciated. 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. 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 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.

U find when an outbreak occurs my stance changes as walking can be very uncomfortable….. Her doctor suggested this was linked to her LS? Is this likely? 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. 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 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.

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Thankyou for your time. I was so happy to have found this site. They told me that it was probably causing by tearing in childbirth. Should I find another doctor? Hello Geejay Thank you for sharing here. 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. However, I manage.

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Please, does it ever get better? All has been stable for quite a while with regular 6 month appointments at the Hospital until this week when I suddenly became very sore around the vulva area. Exercise running often causes a ripping feeling in my vaginal area. Thank you for your wonderful response. In order to contact the YPA, please click on this link or on the Report Abuse link at the bottom of the page. I live near Marseille.


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