Does it get worse before it gets better??

Posted , 8 users are following.

Hi everyone, first of all I am so so glad I have found this forum as I am struggling to find information about LS form people who actually suffer with it too. I am a newbie so bear with me I know I need to do a lot of reading but I am after some advice

I was diagnosed with a biopsy a couple of weeks ago and started treatment a week ago. I have been given Dermovate ointment to use everyday for a month, then every other day for a month and then twice a week for a month before being reviewed.

I am still waiting for my first nhs gynaecology appointment, it’s in February 2019 haha! I think they hope my whole vagina will just drop off by then

So after months of being treated for thrush even though every swab for everything possible came back negative and no GP even examining me!! I finally researched a private consultant dermatologist who specialises in vulval dermatology and that’s how I was diagnosed...pricey but worth it to get some answers!

Anyway here are my questions. I appear to be getting worse symptoms since using the steroid cream. It makes me red and sore. Is this normal? Should I bear with it? Or is this just an unrelated flare up? My flare up symptoms are soreness, itching, inflammation in vulval area and a cut in bum crack that is sore when going to the toilet for a number 2. It burns when I wee. These symptoms get worse when I am on my period and if I am stressed.

I haven’t adapted my diet yet, I go to slimming world already as I need to loose weight but cutting out sugar AND sex now that’s just a step too far right?? I spose I can’t drink wine either? FML

The dermatologist also gave me an emollient to wash and moisturise with which I have been using, I think it’s called cetraben, this also does not feel nice when I apply it, maybe it’s this that’s causing an issue?

My next question is I have already had some changes to my anatomy, can this be stopped?? I am only 31, we have 2 small children and I am hoping to still have another

To be honest I was kind of hoping this steroid ointment would fix it and it doesn’t seem to be that easy and I guess I’m finding it hard to come to terms with that.

Last question for now what do you do ladies when you are on your period? I have tried organic cotton tampons and sanitary towels and it’s just all painful

All advice and comments welcome

Thank you!

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  • Posted

    use very very small amounts of steroid. less is more or you will hurt the area.. i use like a half of pea size. over did it at first and got worse... stayed light and it was lovley.

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    • Posted

      oh gosh thank you so much for your reply! i am using a lot more than that, i am using about an inch of ointment squeezed out on to my finger. but its hard to know where to put it exactly, only on white patches? on areas that itch? the whole clitoral area itches and is changing aswell the labia so this is quite an extensive area

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    • Posted

      emmy, a little bit of steroidal ointment goes a long way. How could someone who specializes in vulval dermatology not see fit to tell you how and where to apply a steroid? You are not the first women to report a doctor giving insufficient advice on how to use a potent medication and it's very distressing to hear.

      I have used approximately 1/4 of a 30 gram tube in 6 months. My gyn was responsible enough to actually draw a diagram of where to apply it and clearly explained that I was to use a very small amount. Anyone with common sense, let alone a medical professional should understand it's a rather awkward area to see on one's own body.

      I used a little too much on one occasion after diarrhea caused some splitting and I immediately had a bad reaction. Skin became inflamed and very sore. I held off using the ointment for over a week as my gyn was away. She then had me use it just twice a week after that for about 2 months. I was advised today by the nurse to use it 5 nights a week (between the 2 nights using estradiol for atrophy).

      If I were you I would call the doctor I PAID, have him refer to his records and have him tell you precisely where it should be applied. He could even draw a diagram for you as mine did for me. In the meantime I think you might want to give your skin a rest, but to be safe when you call that doctor you PAID ask for his advice.

      Wishing you the best. I have had quite good results from using Triamcinolone which is a mid strength steroid.

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    • Posted

      oh my god no wonder i am sore i have used 1/4 of the 30g tube in a week!!

      the consultant did tell me to use it sparingly and only put a thin layer on but i thought i was by only using a fingertip full. she also told me to put it wherever it hurt and on the white bits, it bloody hurts everywhere though!

      i have applied a really small amount tonight so i will see how i go but it must be because i was putting too much on as its now red and inflamed

      i think also the knowledge that i already have some fusing is scary so i want to make sure i am covering all the right areas to try and stop it!

      thank you for your advice

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    • Posted

      yes i got folliculitis from over use..i used a antbiotic ointment for 4 days and the area healed..went on with the tiniest dose of steroid. take a few days and just sit bath just water once a day stay dry

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  • Posted

    Hi emmy, as mentioned, a tiny bit of steroid cream is all that you need, although it sounds like you might need to give it a miss for a couple of days to give yourself time to recover from using too much. When you apply it use a hand mirror and gently rub it into the areas that feel itchy. Also, the other cream that you have been given (cetraben) might not agree with you and so you could put that to one side for now and try it again at a later date when your Vjay is feeling better.

    The cut you refer to in the crack of your butt is a common symptom of LS and I personally found the steroid cream too strong for cuts and so I used Desitin baby cream, or any baby bottom cream, again, only use a tiny bit. This seems to work well for cuts.

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    • Posted

      thank you for your reply , there really sounds like a lot of trial and error with treatment!

      i will try some baby bottom cream on crack and give the vag a rest for a couple days before i start with a teeny weeny bit of steroid again

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  • Posted

    Emmy, I have read the replies and agree with everyone. I would like to mention that in between using that pea size ointment on the white areas, that you can use common olive oil to moisturize and it will help heal that backside fissure.

    as far as the fusing goes, I put that steroid (mine is Clobetisol) on only the white areas as that is the fusing lines. Once your labia fuses it will not infuse. so heading it off as much as you can is my advice.

    Wine is my only diet vice I have and damned if it doesn't flare me up; but then, so does crying or getting angry or having bouts of high anxiety.... so I don't know the answer to that one.

    good luck to you!

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    • Posted

      oh really, see thats where i find it hard to know where to apply the steroid, all the white patches are below the clitoris area above the vaginal opening so its easy for me to put steroid there. but i basically have no labia minora left at all they have just disappeared and the labia majora has shrunk, the clitoris is being buried by the hood so that is worrying me so i have been putting steroid allllll over those areas, even if its a thin layer that still an extensive area, i probably should call the consultant but i reckon you ladies know more!

      this whole thing first started when i was dealing with a period of extreme anxiety but i dont really know how to keep stress free i have a high pressure job and two toddlers...even just talking about it makes me need wine lol

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    • Posted

      julia, I would think that crying would be a release of cortisol which would be good! But clearly we need to avoid a stress response to begin with. Maybe we should all become buddhists! But seriously, we can't control what happens around us as much as we can control our reactions to it. And we can try to arrange our lives in such a way that avoids unnecessary stress. Unfortunately, earning a living makes that difficult, but when it's a choice of more money/stress or less money/stress some of us can choose the latter. I try to remind myself I will be dead soon enough which puts things in a more proper perspective. 😉

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    • Posted

      And my gyn said to put it only where she sees there are signs of LS! Clearly, there's a lot of punting going on. I decided yesterday after speaking to a nurse in her office to use the steroid on any area that doesn't "feel" right rather than wait for visual signs and see how that works. Of course, this nurse said to use the steroid 5 nights a week which is not what the gyn had originally said (and not what the last nurse said). I get told "someone" will talk with the dr and get back to me, but that doesn't happen. If the current regime doesn't work I will have to insist on a call back from the dr. Hate being put in this squeaky wheel position, but what are our options?

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  • Posted

    you're putting it where it should be applied then. isnt it a shame that our architecture gets so atrophied before we realize this is more than an itch, this is really something that should be investigated. I have same closed up clitoral hood and if you look up clitoral hood phimosis there is a whole education out there regarding it. and there IS a surgical correction for that.

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    • Posted

      yeah Julia you are right its crazy that our anatomy can change so much without even me noticing let alone any medical professionals! i can safely say i never looked down there before all this kicked off ever! now i use a mirror to look down there every couple of days so i am noticing changes. but i suspect i have had this for longer than i realise, as a child i had chronic issues with vulval pain and soreness passing urine and i would refuse to wear jeans or anything tight down there, it started when i was around 4 years old and would come and go, disappearing at puberty. the GP said it was food intolerances?!

      anyway since giving birth a couple years ago i have had issues with recurring thrush, it was probably this all along and was possibly triggered again by tearing and having stitches to repair after childbirth so i have probably had it untreated for a while

      why do gp's focus on thrush so much as a diagnosis i mean yes initially its probably a good bet but after thrush treatment hasnt worked for months why did none of them (i saw at least 5!) think it might be investigating this, is LS really that rare?

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    • Posted

      I remember several years ago I got where when I peed it always seemed aimed at my left thigh. I thought I must really be putting on some flabbiness because how odd that it just began and didn't stop. I look back now and realize that was also the time I was losing interest in sex and my clitoris ached all the time.

      who knew it was the beginnings of my fusing 😦

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    • Posted

      oh gosh do you have issues with passing urine now? i dont blame you though i mean before you were diagnosed with LS had you ever even heard of it before? let alone imagine that there is a disease out there that could change your anatomy! cus i certainly hadnt, i still cant believe it now its like the stuff of nightmares!

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    • Posted

      I actually had to Google shrinking painful labia and paper cuts....and then found out for myself. I've been on this page for a while now. I had to tell my doctor I don't believe this is herpes, being aggravated by my clothes but that I think its lichen sclerosis. I was mis diagnosed FOR YEARS even though I kept complaining.

      I went to someone else and was biopsied even though they also did not think it was LS. I didnt have classic white shiny skin. I had paper cuts all around my perineum and vagina. .... and clitoris fusing.

      We have to be our own investigators. This LS is illusive to the medical world because we are embarrassed to tell a doctor "Hey my clitoris hurts and I'm peeing on my thigh....and I cant stand to be touched"

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    • Posted

      yeah i was tested for every sexually transmitted infection going THREE times before they finally ruled that out and then still said well it must be thrush...oh my did all that anti fungal stuff aggrovate my bits!!

      LS can present in atypical ways cant it, i get paper cut like splits in my perineum every now and then also where the skin is thin, usually after i have sex, having lots must be agony!!

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    • Posted

      emmy, best I can glean is that LS is not all that uncommon after menopause. Perhaps it's been confused with atrophy, but certainly gyn's should be more able to identify it, or at least suspect it. I had been warned by a new gyn when atrophy was diagnosed that more serious issues could develop, but I just didn't understand the specifics and wasn't given enough info. I even contacted her by letter afterwards asking for clarification. For whatever reasons she backed off and basically said if I changed my mind about using hormone cream there would be a standing prescription for it. I purposely avoided it because my sister was dying of estrogen dependent breast cancer, the atrophy wasn't causing any problems and I thought it may just be natural aging. However, it progressed for 3 years without my being aware of it. In hindsight the gyn should have said it was important for me to have regular exams. As annual PAPs were no longer recommended, I didn't bother returning. Ignorance is not bliss.

      LS is rare with younger people. Even children get it. Have read of young girls having it, but not young boys, though men do get it. You should do as much reading as possible, but not just anecdotal reports. Autoimmune diseases appear to be complete mysteries. The body attacks itself, but there doesn't seem to be a clear reason why or a way to stop it from happening. Steroids work by preventing cells from producing inflammation-causing chemicals that are released in response to a variety of triggers. So for now I guess the best we can do is avoid individual triggers and use steroids.

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    • Posted

      Hi emmy, I think the reason that doctors focus on thrush is because for some women (myself included) when I have a flare up I tend to get a white discharge which has the exact appearance and consistency of milk!!! this is what I refer to as an LS symptom. Of course not everyone gets this but I have a feeling that many do! and so the doctors immediately think it is thrush, as do most women as well.

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    • Posted

      yeah i am relatively young although i dont feel it haha i'm 31, i have read loads about women not being told they need regular check ups and just being given some steroid cream and sent away, i think that is terrible care, LS needs a lot more management than that from what i can see

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    • Posted

      oh really? i didnt know about the white discharge and i havn't experienced this myself but i can see how that can make it even more confusing and difficult to diagnose!!

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    • Posted

      guppy, and to add to the confusion 20 years ago I had an infection that created a discharge that felt like battery acid. I was not given a flagyl despite my requesting it, and was apparently being treated for atrophy as well as being given various antibiotics for 5 excruciating years. Nothing worked until another doc gave me a flagyl script. Next 17 years passed without incident till I was diagnosed with atrophy. Three years later just a fleeting feeling of infection, & shocking LS diagnosis. Flagyl worked immediately on the infection symptoms, but only temporarily.

      So now I am in the what-to-do-about-the-LS boat, but apparently in good company. I do believe many women have this problem, but it has gone un or misdiagnosed. Either that or there is a sudden increase as with diabetes. We now know poor diet and lack of exercise are responsible for that. What could be responsible for an increase in LS?

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    • Posted

      Hi beverly, it is worrying to think that LS is on the increase with no sign of any real research being done. I have IBD, passed on, it is a hereditary factor in my family, and likewise I do believe for many women somewhere down the line a family member may have had LS.

      I also have a feeling that LS isnt something that just appears out of the blue. I think it is possible that we have all had this from being an infant without showing any obvious signs, and as we age it starts to show itself, the culmination being when we hit menopause.

      But, I also think it is possible that there might even be a new different wave of LS coming through as well.

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    • Posted

      guppy, I have bowel issues as well. Am lactose intolerant so that was a factor until I narrowed it down. The IBS became more pronounced after menopause, but since drinking kefir daily for the last several years it's far more under control. No medication had any effect on it. Avoided lots of foods that I now eat again. Do you drink kefir?

      I wonder if people with AV don't typically end up with LS (as I have) and never know it. The gyn said older women come in not having any idea what bad shape they are in as they don't feel anything out of the ordinary. I felt just mild discomfort if any. It was the fleeting infection that brought me to the doctor.

      When I was very young I did have skin issues on my upper arms for a while. My mother had to smear on a nasty tar medicine and wrap my arms with torn sheets. Guess that must have taken care of it, because I can't remember any further incidents. It was never diagnosed as eczema or psoriasis. Maybe a precursor to LS? Don't know.

      LS seems like it would be in the psoriasis family. But in terms of actual architecture disappearing it seems more like leprosy (which is at least an infectious disease that can be cured). I doubt much effort will be put into an LS cure. To my knowledge psoriasis can't be cured and that is certainly more prevalent. Multiple Sclerosis is an autoimmune disease and that is controlled, but not cured. We can hope, but I think basically we have to learn what works best for us individually.

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    • Posted

      Hi beverly, I think it's going to take someone in the spotlight (perhaps a celebrity) that has Lichen Sclerosus and is willing to talk about it before people are even aware that it exists lol!

      Re the Kefir, unfortunately I cant have it as I have a big problem with Histamines in that I'm seriously histamine intolerant. Its a shame as it is extremely good for you. I have it here in the house for my daughter and husband but I react to it which is a blow.

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    • Posted

      Guppy you are right about it being unlikely that anyone will raise awareness of LS in the media as it is still taboo to talk of that part of our bodies openly. A recent 'GPs behind closed doors' TV programme featured a menopausal patient with itching and she was prescribed oestrogen pessaries and told she was very dry because of lack of oestrogen due to menopause. . probably all true but there was no mention of yhe fact that it could be due to something more than that and that she should be mpnitored. None of my women friends have ever heard of LS.

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    • Posted

      If it was OK for a vice presidential contender in the US to talk about erectile dysfunction on TV ads I don't see why LS can't be talked about. LS is probably often diagnosed as atrophy and left at that.

      The fact that LS is an autoimmune disease puts it in a category that isn't very popular. What autoimmune diseases are curable? We hear a lot about diseases we didn't even know existed because the pharmaceutical cures are advertised (in the US...not sure if the UK allows it).

      Just read there are over 80 autoimmune diseases. How many can any of us name?

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    • Posted

      Agree, Beverly - when there is a cure and the pharmaceutical companies can make profits then it is broadcast loud and clear though not necessarily through advertising in the UK. And it's as if the medics don't want to engage with LS patients because they haven't got a cure and can't offer much solace. But they could at least join together on their diagnostic processes so that we don't all get such mixed advice.

      And listen to their patients descriptions of symptoms and their histories more?

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    • Posted

      I'm getting mixed advice from the same doctor's office. Called and spoke with a nurse asking to clarify med regime with gyn as it has changed several times. Too many days passed so I called again & spoke with another nurse. She looked up my records and gave me yet another regime. After I hung up it occurred to me I should have confirmed this was the gyn's most recent order. Got a call yesterday from the 1st nurse apologizing for not getting back to me sooner who gave me a different regime, supposedly from the doc. This does not make me feel comfortable.

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    • Posted

      Hi beverley, yes, anything fermented: pickles, sauerkraut, kimchi, kefir, cheese, yogurt, fish. I have narcolepsy due to Histamine intolerance..if I eat two or three foods high in histamine at the same time I pass out. Ive just sent off for the 23andme test to see if that will give me any ideas as to why I have this at this level.

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    • Posted

      Hi sarb, I had never heard of it myself before being diagnosed. Most people don't know it exists and when they do they can hardly believe it!

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    • Posted

      I have a lot of confidence in the doctor, but not her staff. Really wish patients were able to email her. I mentioned it last time I saw her and she looked rather rueful saying they don't have that yet (as though it were rocket science).

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    • Posted

      First I heard of it was a few years ago on this site when reading posts on atrophy. Someone mentioned having been diagnosed with LS as well. I looked it up and assumed it must be very rare because I hadn't ever heard of it.

      When I was diagnosed with AV the gyn warned me of possible dire consequences if I didn't use hormone cream. The only specific thing I remember was a possibility of cancer. Went home and immediately started searching for info. That's when I found this site. Found nothing about a cancer connection, so wrote to the doc (speaking to them on the phone is next to impossible). She called and backed off the cancer comment saying only it was my choice and I had the prescription should I decide to use Premarin which she said was safe. IMO there should absolutely be a handout explaining specifically the issues that may develop. No doubt I would have still avoided the hormone cream at that time as my sister was dying of breast cancer, but I surely would have gone for annual check-ups. Water under the bridge.

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    • Posted

      Hi beverley, its an offshoot from my main problem which is Multiple Chemical Sensitivity with multiple food intolerance's. I have a problem with salicylates too.

      So, it makes avoiding gluten seem like a walk in the park.

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