Still 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've just been given diagnosis of lichen sclerosus and been told to use dermovate. I feel a change in clitoral area, does the use of steroid improve skin around this area? I still have great discomfort with burning and stinging!
View 41 RepliesI 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.
I went for my 3 month follow up gynecologic appointment, after 1month of Dermovate cream everyday, 1 month every other day and the final month of twice weekly. I have followed DR Goldstein's application advice throughout this time.
I am still incredibly itchy. My gynecologist was surprised that I was still itchy after the treatment cream and spoke vaguely that 'one day I should be able to do without the cream but if you are still itchy, use it as you need'. My understanding is that I should never fully stop using the cream.
This was how it was left due to my appointment taking another twist which I shall post in a different discussion.
So, what do I do in regards to the cream. Shall I use it daily again to blast the itch and hopefully stop it? It's awful.
I turned 60 last year. However, I don't look it, and get away with being mid 50's. Unfortunately diagnosed with LS recently. Sex was always a problem and I thought it was thrush I was immediately getting. However, it turned out to be LS. But I still get uncontrolled thrush as well. The Dermovate ointment which I have to use daily at the moment gives me thrush! Can anyone help with an alternative. I am so very sore and depressed.
View 36 RepliesFor the first time in many years I have no white patches. My GP has suggested that I take a month off the dermovate to give my body a break. Has anyone done this?
At the same time I feel that even though the white has gone, more bits of me are shrinking and I'm feeling a bit panicked by it.
Hanny when you say that your fusing is almost gone, is that the fusing closed that dilation is helping with, or are your labia unfusing and coming back? I'm also dieting. I was doing it twice a week but that isn't quite enough for maintenance so I'm going to go back to every other day. An aromatherapist also recommended Jojoba and chamomile essential oil which I haven't tried yet. Coconut oil works well for me as maintenance, but I'm always hoping to find the magic ingredient that helps me move forward rather than stand still. Aren't we all? I will feed back when i try it.
For the first time in many years I don't have any white patches and my GP has suggested that I come off Dermovate for a month to give my skin a rest. I'm sure there's still fusing going on though I don't have any itching either.
I'm puzzled. I've been using my steroid for about a week and a half. In the last day or two my clitoris is getting sensitive and sore to the touch. Is it from steroid or Aloe Vera gel? Any thoughts?
View 31 RepliesSo 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 RepliesI experienced impetigo for the first time about 4 months ago which was treated with antibiotics(flucloxacillin)-it appeared again & treated with antibiotics & a 3rd time-I thought this had cleared when i got it again 1 day before my hols last week & when i returned home this week--I have been prescribed 1 months supply of antibiotics again 4 a day for 2 weeks then 2 a day for 2 weeks also i use fucidin cream----I am 56 yrs old very clean & very fed up & upset--what am i to do about this?
View 1 RepliesWhen 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 Replies