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.
Since being diagnosed with Lichen Sclerosus last February, through trial and error, I have discovered, sometimes painfully, what works for me with regard to using Clobetasol cream.
When I initially had the typical white LS plaques, which were on the inside of my Labia Minora, I used Clobetasol and it worked quickly, and effectively, and I think it took around a week for them to clear up, using it twice a day, and fortunately they have never returned. Also when I have had pain, and soreness on my clitoris, I will use it twice a day for around four days, and I have found it to work really well for clearing this problem up quickly.
However, Clobetasol did not work for me when I had a sore area (a lesion) about half an inch away from my Vjay. I applied the cream carefully, and the next day I had a seriously nasty red rash running everywhere, and up the crack of my butt!! and so I stopped using Clob in that particular area after that, and the next time I got a tiny sore in a similar area I bathed in salt water and used baby cream, Desitin I think it was initially, and I think I used vaseline before bed, but only for the first couple of days, after that I switched to bathing and then using hardly any talcum powder on a powder puff to make sure that there was no moisture down there whatsoever, and this worked really well. I have found sore areas need cream initially, but then they need to be kept dry, and after a few days my sore area cleared up! So for me, using Clob on my Vjay works, but for on the surrounding skin not so much.
With regard to maintenance, I don't use the cream. My Vjay looks normal, no white patches, cuts etc and so I don't see the point of applying cream to areas that show no visible sign or symptoms of Lichen Sclerosus. I do believe in the routine of spraying after using the bathroom, drying and lubricating, this I think stops fusing from occurring and so it is an important routine to have, of which I always stick to rigidly!..so this is what works for me.
I'm listening to Dr. Andrew Goldstein's lecture on LS. He a preeminent expert. He's describing that LS skin is not thin but extra thick, because it's all scar tissue and hardly any skin cells. The white blood cells that cause inflammation are way down deep at the bottom of this thick tissue. So, he makes two major points I would like to have been told, say, A YEAR AGO!
1. Soak it in warm water for twenty minutes first (bath night! I thought baths were bad, haven't had a single bath in a year) to soften the tissue
2. Rub, rub, rub, the cream/ointment in for about 90 seconds. That's a lot of rubbing!
So i went to see my doctor after using the eumovate cream for 2 weeks like he suggested, he says he doesn't think my LS is active and thinks its just scarring from what i had when i was younger like what i have on my side it doesn't bother me at all but he says ill be more prone to thrush and if it flares up use a oral treatment some canesten and some eumovate cream and if it doesn't clear up come back and see him. I have seen loads of improvement since i started using the steriod cream but i'm a bit confused because aren't you meant to see you doctor like once every 6 months just to check its progress?
View 3 RepliesStill using dermovate steroid cream twice a day, soreness is getting worst, haven't been able to wear underwear for a week!. Feeling so depressed, feel so alone .
Can anyone give me advice?
I have got lichen planus on arms very bad, legs, vulva, oral and now starting on my chest. I have used cetraben, dermovate, dermal, doublebase cream, hydrocortisone, calamine lotion, aqueous cream..my GP been excellent.
Also Tramalgin, betnovate for below and am now tearing my hair out with sleepless nights with itching.
I go to work like a zombie and it's so embarrassing having to scratch, they say the monkeys here as a joke.
This has gone on for 6months nearly...am waiting to see the dermatologist. I had a vulvar flare 4 years ago and was ok up until early this year.
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.
View 4 Repliesjust 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
View 3 RepliesMy 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?
View 3 RepliesI 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?
View 1 RepliesI 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.
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?
View 5 Replieshave 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.
Does that mean that we women are more susceptible to viruses, respiratory infections, etc.? Do most follow a certain diet ?
View 25 RepliesWas 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 ...
View 6 RepliesI 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.
View 140 RepliesI 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?
View 71 RepliesWhen 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!!!!
View 33 RepliesI 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?
View 48 RepliesHello, 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?
View 50 RepliesLast week I had a biopsy and 3 days later it was confirmed I have Lichen Sclerosis. I had never heard of it until now,and I still feel as though I know nothing about it apart from the horror stories that I keep reading about on the internet. I feel so alone as I don't feel as though I can talk to anyone about it (apart from my husband, who is poorly with Multiple Myeloma so I really don't want to add to his worries) I know there is no cure, but is a normal life possible? will I always feel as though I am sitting on needles?
View 36 Replies