Lichen Sclerosus? Vaginal Itching For Around Two Years
Mar 3, 2016
I've had vaginal itching for around two years now, as with most posts I've read I've been told it's just thrush but then I've been tested for that twice now and both tests came back negative. The GUM clinic said it could just be an allergy or thrush of the vulva (if that is even possible?). I have no discharge, other than the normal. It's red near the labia but not exactly bright red. I have small spots but I've googled those before (I can't remember what they're called but they're normal- so google tells me anyway) and whenever I've had an examination then I've been told it looks normal and healthy.
The GUM clinic gave me some thrush cream that also had steriod cream in it and I used that for about six weeks and since then the itching has been much improved. I think it seems to get worse with stress. I don't have any lumps or any white marks or anything which people seem to say are symptoms of Lichen Sclerosus. The fact that it went away with the steroid cream would suggest it's some sort of allergy but I just don't know what to? I have noticed that if I wear no knickers (under a long skirt) then there is hardly any itching at all.
I am currently going through a panic of health anxiety so I can't stop googling these symptoms and it all seems to leads to some sort of cancer so I'm petrified it could be that.
I'm in the UK and I've booked a doctors appointment for Monday where I will ask to be referred because I've had enough of this now. I just wondered if anyone had any ideas or had been through similar?
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We are raw, irritated, red, have tears, hurt, sore, itch, and have white patches. We also have fusion and disappearance of some of our parts. Just by looking you can see it all happening except the fusing and disappearing parts. It seems adhering occurs when you don't know..it just appears one day. Is it occurring when we itch or when we are raw and irritated? Do the white patches causes the adhering and covering over our parts? Does the fusing happen at the white patches or can it happen anywhere else on the vulva where we don't have redness, white patches or itching ? Then do we use it all over the vulva when we are free of flare-ups and using steroid once week? When we are free of a flare-up where to we use the cream? Do we use it where we had the irritation ? Do we use it where the scars are and the fusing is even though we are flare free? I read we use the steroid to prevent further scarring and fusion, but I'm still not sure if the fusion is the result of the other symptoms and when we do maintenance with the steroid where do we put it?
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I am at my wits end. I have been diagnosed with Lichen Sclerosus and it has spread significantly and rapidly over the last year. I have multiple patches on my back, chest, arms and groin. The itching is intense at times, annoying almost all the time. Dermovate and Nereson has not helped. Protopic has not helped and I believe has worsened the spreading? I have been prescribed antihistamines by GP but they don't even take the edge off the itch. Dermatologist just says "it might clear up, keep applying the dermovate". She doesn't seem to be concerned about the rate it is spreading. Going back to GP about the itching next week. I can't enjoy anything at the moment, even sitting and reading a book or watching TV due to the itching. I have a constant worry about the spreading - where will it ever stop? If ever. This is a living hell. Anyone else here suffering it with it in the same areas as me?
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I have been diagnosed with lichen sclerosus in addition to vulvodynia. My main symptoms are clitoral fusion and narrowing of the vaginal opening. For some reason I haven't been able to find a steroid cream that I could use that doesn't cause me a horrible vulvodynia flare (feels like my entire pelvis goes into spasm) and was wondering if anyone had alternatives they use that have helped with this symptom.
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This is a really awkward subject for most but I'm curious as to whether LS can develop from trauma after years of masturbation both from manual and vibrator use? I have come across some places linking LS to trauma of some sort but none of it has been proved. Is there a link?
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I'm not sure if anyone else experiences this? I tend to find something will work for me down there, then it does not. For example: coconut oil has been quite soothing in the past, lately it just irritates me no end.
I tried Olive Oil but it wasn't that great. The Doctor prescribed Sylk vaginal moisturizer and that can either be Okay or not.
Has anyone else got other 'comforters' for LS? Mine gets sore and stingy as opposed to itchy.
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When I received my diagnosis a month or so ago, I spent a lot of time reading this forum and learned an overwhelming amount of information. One post that stood out was someone who had managed to somewhat reverse their fusion with a baking soda spray treatment. I can't find that post, or remember what thread it was posted on, and I'm hoping someone can point me in the right direction. If there is anyone else who has managed to reverse their fusion.
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just been reading some of your comments and diet was mentioned, I try to have a healthy diet , don't eat a lot of spicy foods, I always buy fresh veg and only eat fruit like bananas that don't have much acid in. I must admit to having a sweet tooth and do like sweets and I have noticed more flare ups if I have lots of sugary foods. Try to keep my sweetie intake to a minimum which is hard because I think if you suffer from LS you need the occasional treat to cheer you up.. Maybe my fairly bland diet is helping to keep the LS stable
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My Mother suffers from Lichen Planus, which I know is not exactly the same as Lichen Sclerosus. She has recently found urinating really painful. She has today found a convenient way to make things a bit easier. She fills a sports drinks bottle with warm water, and squirts this against herself when she urinates. It is soothing and also cleanses the area each time. hope this may help some people?
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I was diagnosed last year. I also had an early menopause as a teenager so we are looking into IVF to have a baby. I am struggling to find info on how LS affects pregnancy and birth if we are successful? Also thinking that the steroid cream can't be good for pregnancy?
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I have questions about the clitoris being buried. My first LS breakout was about 7 months ago. Have had a couple less severe ones since. I've gotten tremendous relief and healing with the hydrogen peroxide/saline spray, and Caprylic MCT oil (derived from coconut oil) Didn't even know what the heck it was until I found this forum. Have not been to doctor but will make an appt. Noticing as I examine myself that area that my clitoris may be "disappearing" behind folds. I've been reading on this forum and wonder: does the steroid cream reverse the fusion a bit? Enough to free it again?
I had a friend who had a procedure to "free" her clitoris -- not an LS sufferer, but her architecture was such that it was covered up & couldn't climax with her husband all their married years. She finally did some research and found a doctor who specializes in this, and he said "you're 100% covered up". With a minor procedure, she is now normal down there and able to be satisfied with her partner.
I was just wondering if the steroid cream or perhaps this procedure could restore my clitoral area as well. It's been such a short time and my sex life was very satisfying just months ago! I'm 53, btw.
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I'm going to have a biopsy done in few weeks time. I was advised by the dermatologist to get some metope (sp?) gel and apply it 1/2 hour before the procedure. However, I look at the instructions and you have to put an air tight covering over the area once you've applied the gel - something like cling film I think. But how will that work on my fanjo?
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have any ladies had the CO2 fractional laser for LS? The reason I ask is that my dermatologist has finally given me the name of the laser they have suggested for my treatment as I'm struggling with the steroids/HPV warts cycle. They have suggested having the CO2 fractional laser followed a couple of hours later by PRP treatment. The dermatologist said they see the best results with ladies who have this combination on the same day.
over this last week my left labia minor has disappeared 😟 Completely and I have struggled to keep the itch at bay. Although the white patches have diminished. in the last week I had to use the Betnovate but after a day the itch/pain was so bad and not subsiding, that I used the dermovate, this I think was the only thing that helped with the itch eventually. But as I struggle to use these creams I have to be very careful as they induce warts.
Hence the doctor has suggested I undertake the CO2 laser and PRP combination next week.
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Does that mean that we women are more susceptible to viruses, respiratory infections, etc.? Do most follow a certain diet ?
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Was diagnosed a few weeks back and steroid cream helped loads but tonight I have what can only be described as a tightness to my clit ( sorry tmi) almost like it's being pulled back ...
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I have NO symptoms and I do know how lucky I am not to suffer the way most people do. My inner lips just turned white and despite diagnosis and being given Dermovate they completely disappeared in around 2 years. And now my clitoris is going too. No itching, no fusion or adhesion. It is horrific to have nothing I can do simply watch helplessly as it goes. Has anyone else experienced anything like me? I feel quite the freak and so alone.
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I feel such a failure. I'm a trained nurse I give other people advice all the time yet I cannot help myself...let alone others. This is so difficult. I thought I was healthy. I eat well and have a positive disposition...well I used to. Will I ever be the same again?
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When I was diagnosed last month I had fusing toward the back of my labia minora to my labia majora. When looking today the fusing is getting worse and I almost have no labia minora. I am very upset tonight. Will it ever unfuse or is it gone forever? Freaking out!!!!
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I wish that was so,but in the world i have been it,men want sex,you all have boyfriend commintments,i bet there isnt 1 person on this site that has had this terrible deisease was single and then found a loving man that was understanding.not likely!!!!.i have problems just like anyone else,but i cant think of what could be worse then this,oh wait yes i can,not ever being able to live in a place of my own,some man wrecked that for the rest of my life.i have about 3 problems in this life that will never ever go away,1 of them being this stupid disease.the other 2 can never be fixed either,but this one is the worst of the worst.why do we have this?i just dont get it.negetive or not,i know i am single for rest of my life.you all have men i'm sure of it.or there is just a few of us that are on here that is single,i wonder if the ones that are single feel they will be single forever.there just has to be some answer to this.they have a so called cure now for hep c took years.well i will be long gone when they can fix this one.i wish i could be postive some how but really how?
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So I saw my PCP yesterday. Hadn't been able to get in to her for two years. She was great at listening to me. Finally after 10 years with LS she is referring me to a gyn at the hospital.
I want to ask for an estrogen cream. So my question to you all is what do you use on your vulva and do you have it compounded in something. If so what is it compounded with.
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Hello, I am a 48 year old woman who was diagnosed with LS four months ago, having been suffering with increasing symptoms for over a year. I started menopause early, aged 43 and as a result of a routine blood test for this also discovered that I have an underactive thyroid so take levothyroxine daily. I've been managing the LS reasonably successfully in terms of daily comfort and sex life but as you can tell from the title of this post, I am an equestrian and this is where my real problem lies at the moment. I have two horses and until several months ago rode at least 6 times a week. As my symptoms were progressing and before diagnosis I tried everything to relieve the pain - vaseline, feminine pads, gel filled saddle savers etc. If I space my rides and only go for a light hack I'm fairly ok, but any serious riding and I'm wrecked afterwards. I have just purchased some cycling shorts with what was described as a 'perineal relief' pad in the gusset area - hoping I could put these on just before riding and take them off again if they help. I have also gone so far as talking to a saddler (male, so that was fairly embarrassing) about the possibility of using a gel pad with a hole in the middle on top of my saddle. He is having a think, but there are lots of ergonomic issues with balancing on top of a horse which also have to be considered. Does anyone else here manage to ride (or even cycle) successfully using remedial padding or accessories of any description or am I facing a life without horses?
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