LS just confirmed after biopsy

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I am one day into discovering I have LS. Out of nowhere last December I felt what I thought was a small lump in my vulva, then two ulcerated and inflamed areas appeared and I would literally scream when I had to pee, it felt like someone was setting fire to me. Nurses and doctor at my surgery had never seen the like, so I was referred to a lady gynae at my local hospital - only problem was the wait for an appointment (2 months), then being told I needed to have multiple biopsies under a GA (another 2 month wait) - all the while nothing to help the burning or the pain as until the results came through no-one knew what they were treating. Following the biopsies I have had a 5 week wait for the results, during which time I have often had to go back to the ward in agony, all they could do was give me anaesthetising gel to ladle on. I have shed buckets of tears, in pain and frustration - and to top it all I developed severe thrush on top of the problem areas. I cannot describe the pain - I did all the things I was told, loose pants or no pants, aqueous cream, no soap etc. Sitting - agony, nighttime- agony. wearing clothes- agony. At last the results were phoned to me by my consultant yesterday(14th) and Trimovate prescribed. Apart from never having heard of LS I wasn't given any information about the condition - I have got that on-line, nor was the problem of the accompanying pain addressed (lower abdomen, groin). Tonight I start the Trimovate - my GP told me they don't tend to prescribe Dermovate for the condition (though I notice many of you have had it). I wonder has anyone else been on Trimovate? I am 59, post menopausal, singel and been celibate for 26 years - so the condition can't be aggravated by sex obviously. However I have had 3 spinal operations, suffer with Ankylosing Spondylitis and IBS - and there are thoughts that LS is linked to these as an autoimmune disease. Does anyone else know any more? As LS is a pre-cancerous condition I contacted Macmillan Support, but it appears there are no support groups for people with this particular condition, only this site. Does anyone know of any groups? I live in East Sussex and I don't know about others but living alone I really could do with contact with fellow sufferers. This condition seems so hard to live with and understand, and not one easily explained to 'just anyone'. I have read many of the postings and have bought Replens to try, but the Paladin cream mentioned is not listed in the Pharmacists book so am a bit at a loss with that one. Hoping to 'meet' for mutual support. :?

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  • Posted

    Hiya papillon, Amongst all the awfulness of what you have been suffering at least you now know what it is . I found this in itself a relief . You can now begin to heal your body (and in my case , my mind) as i think the effects on body and soul are linked. Paladin is bought on line at rash.com and there are a few other LS forums out there in cyber space. My own favourite is ls-bxo.org , but also health.groups.yahoo.com/group/ Lichen Sclerosis (or similar , you may have to play around with the words a bit) is very very active with about 3000 members or so and rising.

    I also am having a flare up at the moment and have a dose of thrush thrown in there as well. The two seem to nearly always appear together for me ,which is why i was misdiagnosed for years with thrush.

    I am sure there will be other reply',s of more help than mine, but i wanted to reassure you as soon as possible that you are not alone and my thoughts are with you out here in cyber space. Take care and keep posting. Netty x

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  • Posted

    Papillon, I'm so sorry to hear of the symptoms you are suffering with LS. How awful for you that you have had to wait so long for steroid cream which will undoubtedly ease your symptoms. I can quite imagine how rapidly this condition would deteriorate without treatment as the initial stinging i feel with a flare up is bad enough. I too use Trimovate and it works for me - as and when required, but I believe it is also used as a concentrated treatment over a number of weeks in severe cases. I was lucky that this was prescribed to me very early on by my GP before they knew what it was and before my referral. I also use Dermol daily which reduces the need for Trimovate so much and unperfumed soap. I have noticed that it isn't used by many on this forum. My gynae assured me this was a low dose steroid cream but I still use with caution. I too am currently being treated for thrush so have used the pessary and Clotrimazole cream. I had no idea that LS and thrush often go hand in hand. Like you, I am looking for answers but there seems to be so little out there. I'm grateful for being able to link up with other sufferers and really just wanted to acknwledge your post. Keep posting and take care x
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  • Posted

    Hi Papillon

    I seem to be the only one actually NOT suffering at the moment (famous last words)! I use aqueous cream which helps for me and also KY jelly is great - I know people use it for other things but as a cooling thing and a lubricant it helps- I do feel keeping the area lubricated helps. My doctor has also recommended that I cut down on acidic foods and especially orage juice or lemon juice. Also, sweet stuff- but then as I'm diabetic I'm not supposed to have yummy things like that anyway sad

    I found the steroid cream didn't work for me- I think there's different things to try and each of us reacts differently- I also found ice cubes in a plastic bag slightly melted helped- but do be careful they don't give you ice burn.

    I was suffering really badly not that long ago and now it seems ok- had a smear last week and my doctor said there seemed to be no imlammation at all- at the moment. Stress can also bring it back and I'm trying to be COOL with everything but you stress when it starts to hurt

    Hope you're well

    Trish

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  • Posted

    Hi fellow sufferers,

    Just wanted to thank you all for sharing your experiences, Netty, Trish & Scuba. It really helps to know others understand how debilitating LS is. The list of different things to try is now so long I will be able to keep pharmacies afloat single-handedly! (Well it WOULD be funny if it wasn't so tragic) I, too, get very weepy reading other postings - and though I wouldn't wish LS on my worst enemy - in a strange way it is good to know you're not alone. At least we can all say how we really feel and not put on a mask. thanks again and hope we can all keep posting & helping one another. chins up, Jan xx

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  • Posted

    :D to all fellow ls suffer's have just been confirmed with this had been put off going to my gp's as it was just an itch or so I thought but what an itch where do you start first vigina or anus yep have it in both places but my gp was brill once I saw her she told my straight away what I had gave me a choose and book appointment 3 weeks latter my gyne consultant confirmed I had lichen sclerosus after reading all the above I dont feel so alone I was prescribed fucebet by my gp boy did that help the itch stopped but this was to be used short term only 2 weeks am awaiting px of dermovate will have to wait and see how I get on with that the one thing I dont get is thrush so perhaps there is a silver linning for me dont think I could cope with that as well my husband just thought I been a moody cow for the last year or so as this effects your whole well being so I hope now to learn to live with this and understand that it was not just me take care keep writting between us me might make our own cure :?:
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  • Posted

    Hi all, Just found this discussion group about LS, I am a 47 year old man and was diagnossed with LS about 2 years ago, I have been suffering for since I was 18 with passing urine and narrowing with the end of my penis. I have had countless dialations of my urethra and strictures removed with kwy hole surgery, my LS just came on 3 years ago with splitting around the underside of my penis, I was refured to a dermatologist who was very blarse he just said \"Oh thats LS get your doctor to treat it with topical creams\" well heres my point GP's havent got a clue how to treat LS, every person is different in the treatment of this condition, my GP tried every cream he could think of with nothing working for me, steroid creams just made the skin even thinnner and easier to split during sex or even just moving my position whist sitting ending up with infection aswell as splits and a huge amount of pain, well my wife works at a doctors surgery in admin and desided to have a look around the different mentor sites used by GP and alike, she downloaded stuff from every where she could incuding the british medical council. It seems that their recommendation to dermatologists in the UK is that good results for LS are creams or ointments containing a chemical called [b:4225f400c9]Betamethasone[/b:4225f400c9] It turned out that in 2006 my doctor had prescribed a cream called [b:4225f400c9]Fucibet[/b:4225f400c9] which contained this ingedient, at the time I was using [b:4225f400c9]Protopic ointment[/b:4225f400c9] a replacement for steroid creams as they were just thinng my skin. The Fucibet was out of date but as I were in a lot of pain I decided to try it for a week as I had an appointment to see my GP then. The results were remarkable, my skin was actually starting to repair and not itch, when I had my visit to the doctor I explained this and he said the protopic was stronger than Fucibet and should have worked better, but it didn't. Mt further point is this, when trying any treatment or couse give it a good chance to do its stuff on your skin, don't just because you don't see any results for a week, it may take longer to work, if you don't do this you will get the wrong impression of a cream which may be right for you.

    I hope this helps someone out there, good luck to all posters.

    Dean

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  • Posted

    Hi all

    I was diagnosed with LS 2 years ago - but have had the condition for 3 years (a years initial mis-diagnoses from several gp's)... The consultant that eventually diagnosed me said that it was 'just' a skin condition, and to have treatment with a steroid cream. That's all the info I got from him and so searched the web. The invaluable advice on the web was a huge relief, as was the forums. A few tips are as follows:-

    Cotton underwear, Loose trousers, (jeans are a killer, must be the seam that rubs or something) Non Bio washing powder, dont use shower gel/bubble bath - use emollient to keep the area moist - a small tube in your hand bag is great and one in the fridge !! Eat a healthy diet, and dont get stressed - maybe try yoga, stress can really cause a flare up. Avoid sugary foods, also aspartame in drinks apparantly...... Use the steroid cream as prescribed - dont be too worried about the stuff people say about thinning the skin - it's worth using for the relief - plus, I was told that the thinning mainly occurs on areas exposed to the sun - I doubt we;re going to have that problem smile

    I changed consultants locally and ended up seeing a professor in london. He was fantastic. Explained things so well to me.

    I had fusion over the clitoris and had surgery to put this right. Itching was unbearable and infections and other stuff galore. They say it is an auto immune condition. A severe skin condition - apparantly other auto immune conditions can occur and go hand in hand with LS.... I had alopecia after I was diagnosed. I also suffer from IBS. Even though I have had the op which has sorted some stuff out - I still have the itching etc - its a complete nightmare! I ended up leaving my job - I look after my children now, and that has relieved some of the stress in my life.

    I am trying to get some kind of response from 'This Morning' - I would like to get word out there about this disease. I will keep hounding them! lol

    Oh, Also, Fabia Brackenbury from the NLSSG (key this in to look at web page) is looking for newly diagnosed LS suffers to contact her - for the tv programme 'Embarrassing bodies'. Not sure if she's still looking as havent looked on her site for a couple of weeks, but worth noting - just in case anyone is up for it.

    We all need help, guidance and support from time to time - and these forums are great for that support. I am blessed to have found fellow suffered who understand what I am going through. Thank you.

    Heidi

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  • Posted

    Hallo Heidi.

    Very encouraging to read of your experience. Very difficult for you to give up your work. You seem to have adopted a positive attitude to this disease. You recommend avoiding stress but this proves impossible with the persistent pain.

    I too have been to dermatologist and gynaecologist who can only offer a steroid cream.

    Heidi. Would you please reply and tell me how you managed your alopecia and to what extent your scalp was affected.

    Keep posting Heidi. We need encouragement and hope from strong women like you.

    Like you I carry emollient in my bag to work etc. but like you I too will have to stop work as it is so damn stressful. Lowered feelings haunt me. My doctor and dermatologist say I suffer from severe anxiety (no wonder) and advise an antidepressant. But I am too afraid to take antidepressants knowing their sideffects. Would really appreciate any tips to de-stress. Thank you Heidi.

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  • Posted

    We all have to stick together. Each one of us may well have LS but i am sure we will all have varying experiences of it, and we are all unique and so cope/deal with it differently.

    Regarding the alopecia - I woke up one morning and found that an area of hair was gone - about the size of a 50p piece - I was at the front of the scalp and very noticeable. I went to the doctor (they are always mis diagnosing me) they thought it was ring worm ! I dont have pets etc... anyways - I had a second opinion - and they referred me to a dermatologist who explained that it was alopecia and could well be connected with the LS as it is an auto immune condition. I was prescribed cream to put on the area. They said more off my hair could come out, or the area may not grow back at all - luckily no more fell out and it's growing..... although it sticks up a lot now haha..... I wore a head scarf at work at the time. I was at a very low time during all that.

    I too was advised to go on amitriptyline - an anti depressant as they said it would supress the nerves which can be the cause of the excessive itching. I didnt follow this advice as I too had reservations about the addictive nature of this kind of prescription. The other thing I get are hives - little, itchy bumps on my skin. Itch like mad! This too is all auto immune related.....

    Anyways - I decided to de-stress where I could, follow a healthy diet - I tried cutting out all wheat - apparantly it helps - I didnt find it helped me that much though - so I eat wheat - just not much bread...

    I can't excersise - I get sweaty and that makes it all a million times worse!

    I havent tried riding my bike since being diagnosed.... and ice skating seemed to make it worse too.

    I am going to try Emu oil as its more of a natural 'remedy'. Its meant to heal the skin and relieve itching and pain in the area. i have already bought some and will keep you posted as to how I get on with it,

    There is no cure for this horrible skin disease but there is support.

    I hope I havent dronned on too much. I just want to help others as much as I can. Don't be afraid to talk about your concerns to your doctor - Always ask for another opinion, this is your life and your health..... and it is YOU that know your body more than anyone.

    Keep me posted as to your progress, be strong, you're not alone out there. smile

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  • Posted

    Heidiw. thank you for theinfo on alopecia. What was the name of cream prescribed for your condition. My gp is anxious that I start ad's but I remain afraid. Having to use dermovate is enough. I have to have biopsies of vagina and vulva in two weeks time so this I am not looking forward to. General aesthetic etc. very encouraging that you seem upbeat. Had you biopsies taken. What was the healing rocess. could you walk afterwards.
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  • Posted

    Hi - so sorry not to have replied sooner - How did your procedure go?

    I didnt need to have any biopsies taken - I was visually diagnosed. My clitoris was completely fused over - I had an operation to seperate the area - and am now using Dermovate 3 times a week and I use Pure Emu Oil for the dryness of the area. I find this a lot better than Epaderm - which i found very thick and just hurt too much when I applied it.

    I think it's finding a balance and finding what suits you as an individual.

    Hope to hear from you - and hope your procedure went well.

    Again - apologies for the late reply - which I am sure you would have needed sooner.

    X

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  • Posted

    Well HeidiW I did miss having you around as you say it as it is! My Con/Derm diagnosed ls but sent me to con/gyn who carried out 1 vulva biopsy at 5 o clock 1 vaginal biopsy at 5 o clock and 1 vulva biopsy at 7 o clock. The clock shows the exact area on the vulva/vagina. The biopsy itself was fine but the healing process slow and unable to sit/walk for a month. I will not go into detail except to say it is manageable now. Dissolvable stitches that can take up to 6 weeks to dissolve. My follow-up apt with the con/gyn was cancelled for another 2 weeks as results not back from lab. I have been unable to medicate the area for fear of damaging the stitches and as a result I notice fusing of inner left labia and more white area. I cannot understand how the Emu Oil is enough to moisten the vulva. Do you wash with emollient then steroid and then Emu Oil? Hw often per day do you have to moisturize. I seem to be constantly dry regardless of how often I moisturize. How do you manage the stress of actually having and maintaining this condition. I seem to find it impossible to de-stress as I worry about the progression. Any great to have you back HeidiW. You appear to be managing very well. Keep the advice coming. M.
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  • Posted

    hi i was diag with LS on tuesday after a biopsy,does anyone know what is the best to moisturise,i was given betnovate steroid cream but no good for me,i use hydrocotisone which is good for the itch,i also bought a sitz bath which is great,i put a little dettol in to wash,i need to know what is the best for washing also,i have made a op with my gp for next week,the gyna was surprised how much i knew about the cond as it was,nt mentioned by them at first,the only reason i knew was by looking it up,the docs dont give you much if any info on it,suppose just to get on with it,any info would be greatly appre xx smile
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  • Posted

    Hi there. Im sorry you have been diagnosed but at least now you can concentrate on soothing yourself..You need an emollient to wash with like epaderm. It is a greasy substance which can be used straight onto your vulva if you are showering/bathing, as it keeps the water out until you are showered all over , then gently lather up on your hands which is the best way to go and finish last of all.. There are many emollients but this one I know works if used correctly.If Benovate does not suit you then go back to your GP as your steroid is your treatment, the rest are surface skin soothers. If this steroid does not suit then you should try another. It does take a little time to sort this so please be patient. A good barrier cream that you can put on at least twice a day on top of and as well as your steroid. This helps to keep excess wetness from the skin and takes away your soreness and itching..Lots of us use Paladin, a rash cream from the states that is sold here now at ****. The most imporant is not to use antiseptics as they could make your skin worse. Emu Oil or Lavender oil (100% pure) have healing and soothing properties. I suggest you read older posts on here and you will find loads of good info and feedback on different products. But remember your steroid is your only treatment so that needs sorting as the Lichen is inside the epadermis not on the surface.. I hope this all helps. SG

    [color=blue:18eac78f7a][size=9:18eac78f7a][b:18eac78f7a][i:18eac78f7a](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

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    [quote:117f1dc269=\"sandowngirl \"]Hi there. Im sorry you have been diagnosed but at least now you can concentrate on soothing yourself..You need an emollient to wash with like epaderm. It is a greasy substance which can be used straight onto your vulva if you are showering/bathing, as it keeps the water out until you are showered all over , then gently lather up on your hands which is the best way to go and finish last of all.. There are many emollients but this one I know works if used correctly.If Benovate does not suit you then go back to your GP as your steroid is your treatment, the rest are surface skin soothers. If this steroid does not suit then you should try another. It does take a little time to sort this so please be patient. A good barrier cream that you can put on at least twice a day on top of and as well as your steroid. This helps to keep excess wetness from the skin and takes away your soreness and itching..Lots of us use Paladin, a rash cream from the states that is sold here now at **** or ebay. The most imporant is not to use antiseptics as they could make your skin worse. Emu Oil or Lavender oil (100% pure) have healing and soothing properties. I suggest you read older posts on here and you will find loads of good info and feedback on different products. But remember your steroid is your only treatment so that needs sorting as the Lichen is inside the epadermis not on the surface.. I hope this all helps. SG[/quote:117f1dc269]

    [color=blue:117f1dc269][size=9:117f1dc269][b:117f1dc269][i:117f1dc269](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

    If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.) [/i:117f1dc269][/b:117f1dc269][/size:117f1dc269][/color:117f1dc269]

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