Posted , 95 users are following.
I was recently diagnosed and it was pretty bad. I thought that I had a yeast infection but it turned out to be this. Prescribed a strong steroid cream and been using for a week now. So far, it only makes my vulva inflamed and still have itching and pain with urination.
I dont like the idea of having to take steroids long term and I am looking for a more natural treatment ! Help !
4 likes, 73 replies
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kimnel Becca86047
Posted
All I did was apply regular emu oil bought at the drugstore that I would rub
inside and out the vagina. Every time after urinating I would reapply. Nothing
else than emu oil, only then I started to feel comfort. I had read online about
purple emu cream but had no time to buy online. I can reassure you I was
finally sensing ease. I kept reapplying and I never had the burning and aching
pain any longer. The most popular benefits about emu is it's anti -inflammatory
effects. I hope it does help someone as much as it did help me. I bought emu Dundee
oil 100 percent pure. If ever it saved you write me a message on fb Nelly Hunt
from Chandler, Quebec
flower31901 kimnel
Posted
wow thank you!
karen97478 Becca86047
Posted
I've been struggling with this for nearly 2 years. At first it started out with patches on my breasts and when I saw the skin specialist he said that was easy to treat but if it got in the vaginal area it would be harder to treat. Low and behold patches on breast went away but then I got it in the vaginal area. I started out thinking I could do this and started with an over the counter cortisone cream. It helped for awhile but then I talked to my dr more and he sent me to a diff specialist. I got a steroid cream from her and at the beginning it helped more. But now? Applying any cream becomes irritating at night when it's at it's worst. I can't seem to have any added moisture down there. I not only have it around the hairline but also around the anal area. I use vaseline occasionally but it is seriously getting worse. I'm not able to keep going to the specialist as I'm not always able to get time off work.
Recently I've started having pain my groin area and it gets quite painful to walk. With Covid on, dr's are doing mostly phone appointments and if necessary will take a patient in. My fear is that the LS is somehow to blame.
anne87765 karen97478
Posted
If I were you I would stop all steroids they only thin the skin and make you more prone to the problem. Steroids are only good for short term usage,. I would look at my diet cut out most high sugars as in cakes, chocolate etc.. Whole fruit is fine, but not straight fruit juices. Wash the area with warm water and an organic oil such as caster oil, pat dry all effected areas, in areas like under your breast/groin fold a dry gauge into the area. In your vaginal area generously apply the organic caster oil and continue to reapply it throughout the day. Use a hot water bottle to take some of the sting out. Wear loose cotton underwear, drink lots of water, take oil of oregano, a good Urinary tract probiotic and in between apply multi gyn or vagisil. Hope this works for you.
karis222 anne87765
Posted
Hi @anne87765, I appreciate you are trying to help but we must be careful in advising others to stop using the medication prescribed by the doctor. I share your concerns about skin thinning etc however my own doctor has informed me that the medical evidence does not show this for patients of LS unless they are using it correctly. Whether that is the case or not, I'm just advising caution telling another LS sufferer to stop using the medication prescribed to her....
Cathy4554 karen97478
Posted
Unfortunately it could very well be from the LS . I have been dealing with issues for about four years now. Sadly my condition was misdiagnosed which left me with scarring that has lead to painful sex and vaginal stenosis as well as problems with rectal stricture which has made bowel movements nearly impossible and required surgery. I am now being treated properly with Clobetasol and issues are getting better. I will need to use the cream for life and have regular monitoring of the LS. leaving LS untreated can lead to cancer.
Be sure you are applying a very thin layer of the Clobetasol just once a day. that will help with any burning.
jackie52271 Becca86047
Posted
Hi Everyone, I'm new to the forum.I have been having symptoms in my mouth since December 2019 and eventually was referred to see a Consultant at the hospital who diagnosed Oral Lichen Planus, though still awaiting a biopsy due to COVID-19 for definitive diagnosis. However, over the last couple of months I have started to experience intense redness around my Vulva area and some itching. Although this may be Lichen Planus, I do suspect its Lichen Sclerosis as these two conditions are common. What I wanted to ask was, have any of you had lightened patches of skin (pale whiteish)? As I have noticed a small patch on the outside near the perineum area and on one side inside of my labia.
ashlee93419 jackie52271
Posted
Jackie, I first noticed a single white spot on the inside of my labia. I had no itching or pain at the time, but went to several doctors for multiple opinions. Some thought it could be vitiligo, as 23 is very young for a LS diagnosis. I eventually got a biopsy done with a tissue sample taken from my labia spot to confirm it is LS. Unfortunately a biopsy may be the only way to confirm. Best of luck to you!
Che1234 Becca86047
Edited
Totally new to this site and have never used any sort of forum before so apologies if I'm not using correctly but I am almost in tears reading messages on here. Sat irritated and itchy at 2am and found myself scrolling. I feel so guilty as i know I'm not terminally ill but I have been struggling so much with my LS. I was diagnosed around 6 months ago and sent off with steroid cream to use every night and I can honestly say It hasnt helped and i cant catch a break! I'm only 27 and away to get married. this is taking over my life! I feel like I'm becoming depressed as well over it. I felt like I was the only one in the world who had it and then I found all of you! I dont have tears in my skin or cuts I've only had 1 flare up that resulted in cuts and blisters and scabbing and none since. However I am just constantly itching and in pain, when I go to the toilet I cant help but itch and rub which probably makes it worse but the urge is too over powering. My gyn called me weeks ago and wants me in for a biopsy but I'm really reluctant to have this done! Has anyone had it? Any recommendations for treatments people have found effective will be so appreciated!
ashlee93419 Che1234
Edited
I just posted a reply to OP, but wanted to reply to you individually so you could see my response (below in the thread). I'm 27 too, and I know how absolutely scary and heartbreaking a LS diagnosis is. I hope you get a biopsy done to be sure. The earlier you know, the earlier you can begin effectively treating it. I definitely recommend the Mona Lisa Touch laser therapy as treatment if you can find it in your area. Good luck!
sandra22874 Che1234
Posted
Yes actually a biopsy is the only way to really know for sure what it is. . .
It's not a big deal and will help in your treatment to know. . . .
You're not alone.
saffie7 Che1234
Posted
Hello everyone, without knowing I've had this condition for many years without a diagnosis. My fantastic GP picked up on the problem when I had a routine smear test back in February. She noticed the white patches on my skin, she asked if I noticed it, I told her yes but didn't think too much about it. To be honest I thought it was connected to thrush and that perhaps the treatment had 'bleached ' my skin. I had been fortunate that I'd had no other symptoms i.e. itching or irritation. My GP was a bit concerned that my previous GP hadn't picked it up during smear tests. My GP was 95% certain it was LS and referred me to a consultant for a definitive diagnosis. I was due to see consultant beginning of June but, due to covid it was cancelled. I finally got to see a consultant in November. I did have a biopsy taken, not going to lie it isn't something I'd like to go through again, but it's done to rule out anything untoward and to confirm it is LS. Thankfully there was nothing sinister but it is LS. This last week I've had constant irritation and I've felt so fed up. I've been given a prescription for dermal lotion to soothe the area until my prescription is sorted out. I literally feel everyone's pain on this forum. Sorry for a long post.
Guest saffie7
Posted
Hi Saffie,
Did you see the report on your biopsy? Did yours say "suggestive of LS?" My doctor said the biopsies are very indeterminate and she would not give me one but I got it done by an other dr. They all say clobetasol but it has not helped me and now I'm using tacrolimus which is an auto immune suppressant. Researchers think the immune system attacks our tissues in that region and possibly on other skin. What kind of dermal lotion did they give you? I've used everything but nothing has cleared this up.
Egg Biscuit
megmacd311 Che1234
Edited
hello!
Saw your post and feel your pain. I was diagnosed(unoffically) at 20. Ive been to 4 different doctors in the past 4 years and finally found a great holistic doctor. Now at 24, i just got biopsied three weeks ago by said doctor and have an official diagnosis. Im not gonna lie, this disease is stressful and unfair and the novacane shot in my clit for the biopsy was not pleasant...but I did it! I Im really here to tell you to look for a specialist who does the MonaLisa touch treatment, more specifically the external treatment. I just had my first treatment this week and Ive already noticed a difference! I will be posting more about my experience with before and after pics for reference on here once Im farther along with treatment.
Goodluck! and know youre not alone at all. Unfortunatley many younger people are probably dealing with this than we know of. if you ever need anything please reach out!!
Cathy4554 Che1234
Posted
It is a tough condition to deal with since it's so private but, please don't give up hope. If you are able find a doctor who really understands this condition. It can only be diagnosed fully through a biopsy. how ling did your doctor tell you to use the steroid. i am to use it daily until in remission and 3X a week after that it will get better but it takes awhile.
2Young2BDone ashlee93419
Posted
Thank you so much for your information! I was diagnosed about 6 weeks ago and so far it hasn't been too bad, BUT along with prayer and this sight, it has helped me feel not so alone. I am an older woman and I am going to look keep the Mona Lisa touch treatment in kind that you speak about!!
Thank You very much!!!
PS I don't have any scaring, but I have fusion over my Clit complete cover and sealed and my vagina entrance was starting to fuse, but has since reversed since I started with the Borax and Bath routine. Clit is still sealed though
cb32068 megmacd311
Posted
This past week, I visited my 5th gyn hoping to get some sort of treatment that would help with my LS. I feel that they just prescribed the clobetsol and rush me out of the office. The gyn tells me to go see a dermatologist and then the dermatologist tells me to go see gyn. It has been like this for 2 years. But reading your post on the mona lisa touch treatment has given me some hope. I'm not sure why I wasn't told about this. I was diagnosed 10 years ago after my chemo and radiation treatments. It has progressively gotten worst. I'm so happy to find this discussion group (tears of joy).