Hello, ladies I'm looking for some help I was diagnosed with LS about five years ago and I can not find any relief from the itching and burning. My doctor gave me all kinds of home remedies to use I'm not able to afford the steroids cremes. And is shrinking normal with LS I'm so embarrassed that I want date or talk with anyone. So I'm asking for any ideas or help with this awful disease thank you in advance.
Evening
Are you in the UK. I’ve done a chat about helpful advice in the West Midlands UK about going to a sexual health clinic, have a read as there are list of some products😃
Hi Torsha,
My treatment contains borax and baking soda baths and rinses. A strict diet: no added sugar, no gluten, no alcohol, no caffeine, limited dairy. For moisturizing I use coconut oil. To keep the vagina open and help the flow of urine I do regular dilation. The most expensive item, of which I am not sure it is beneficial, is hormone replacement. It is important that I eat home cooked meals from fresh ingredients as much as possible. All 'artificial' foods are suspect, the kind of food that never spoils, for instance.
Hope this helps you on your way.
Hi torsha i have tried heaps cortisone best one that work for wee while advanton i had a coloscopy yesterday at my six month check up with gyno i been seeing gyno every 6months use to be every 12 weeks but i got so upset said im over it i asked can we try burning freezing lumps and she did it but it was cruel and it hurts but hooefully i also said i want try some pills but she said to much cortisone having orally but i hv about 30 different creams i think they using different methods to find a cure ive help the gyno some other things i reserched emuaid helps but expensive and the emuaid soap cost $45 but didnt help ive had ls for years the reason gynaecologist check me for coloskopy because it can become cancerous and theres not enough reserch its trial and error but well see when i heal in a day or so as i said i demanded to freeze burn because im so over ls it’s humiliating and Depressing and im sick of the regular checks but atleast there concerned enough to make sure its not cancer as yet so hopefully you get regular checks too and just keep reserching what other ls people have tried good luck hopefully soon someone somewhere will find a cure
Hello Torsha, I'm so sorry about how you're feeling. There are a lot of people on this forum who have ideas about things that can help. The shrinking is indeed part of the problem and the steroid cream is supposed to help avoid it, but it doesn't always work for everyone. If you can't afford the steroids, do you think you could contact the drug company to ask if they can help? Some of them have programs where they give free meds to people who need them and whose insurance won't cover them, or who don't have insurance. There are a lot of people who get relief from the itching from certain creams or even hormone treatments. Don't give up and if your current doc isn't helping you, don't be afraid to go elsewhere. You will become the expert.
Hi torsha i only pay $5 i get 6 tubes of advantan i find it was one of the best im in Australia im happy to send you some tubes for nothing i dont kniw how to use these forums but if you do pl let ne know and ill post it to you gladley to help as i know exactly what your going through also hot shower hand shower head and use hairdryer on warm will give some releif my hart feals for all ls patients
Thank you for the helpful information I am very much interested I live in the United States. Please let me know how can get the products. I can purchase it offline or I can get it from you I'm will go try almost anything at this point.
Thank you I live in the United States but any information you can share with me i will be so grateful.
Thank you for information I just went out and purchased me some items I will try tonight. Yes I'm willing to change my diet. And seek other physicians for help as well for some relief.
Thank you Pat for the information I didn't realize how many women who suffer from this disease. I felt alone no one around has or know what LS is I just cried when I found this site. Thank you truly.
Hi torsha sorry havent been able to get time to reply my daughter been in hospital so with all the stress my ls is flared up gyno put me on another cream its called cortival i seen her on monday ask to freeze burn and inbetween my flair up and procedure im not the best but if you send me your address ill post some tubes advantan i dont know how to use these sites so if you know ill give you my email but not on here so thats the best i can do if you email me ill post to you im lucky that i dont pay all my specialist gyno apointments and dont pay much for most medication so im glad to post advanton to you tcare Raini
I think you need to find a way to afford the prescription ointment because frankly that is the only thing that can actually heal LS and keep it at bay (even on the Clobetasol you will experience relapses/flare-ups). I tried natural remedies which would help temporarily, but several doctors have stressed to me over the years that natural remedies are not a long-term solution to LS and will do nothing for the structural symptoms (e.g. shrinking labia) caused by LS. The itch can be controlled by various oils (coconut, emu, jojoba have all worked for me) and by baking soda baths, but shrinking tissue will not be healed without the steroids. A diet free of sugars and processed foods can help.
I recommend looking into all avenues that may help you to find a way to afford the clobetasol ointment. Many doctors will be willing to help out by providing manufacturer's samples if you tell them that you can't afford the full prescription, or by ordering it through an online pharmacy.
Virgin coconut oil works for me. I buy the 1GM capsules. They keep it fresh for a long, long time. I use 4 or 6 caps a day. I snip the ends of 2 caps and apply with a disposable glove - one cap for the front part, and one for the anal area. I'm 70, so don't really care if my labia "shrink". Will dilate urethra if I have to. The Clobetasol just thins the tissue, and makes the problem worse over time. I do use low dose hormone replacement. That helps. I use mild baby wipes and pour a rinse over the area. It is very important to keep the area clean.
Coconut oil is anti-inflammatory, anti-fungal, anti-viral (formally tested with Herpes), and anti-bacterial. I found it worked much better than Emu oil.
Thank you for the information I'm willing to try something im just miserable right now everything I have been using has not work. I found another doctor to see if I do hormones therapy. Can I ask you what kind washing powder and soap is gentle to the skin with less irration.
Thank you for the helpful info I'm seeing a new OBGYN soon to see about the steroids ointment. And hormones therapy. Do you have any recommendation for washing powder and soap to use everything i use is not working.
Hi Torsha,
I am 53 and was diagnosed with LS when I was 33. The Clob has helped me very well. I have some fusing, and my left labia is shrinking some, but all in all I feel I've been fortunate. My OBgyn recommended to me, cotton panties only, change out of swimsuits asap, go without panties at night, NO bubble baths ever, no douching, wash panties in sensitive laundry soap, don't use any harsh soap to wash your genitals, keep yourself moisturized, use vaginal dilator, and this is what has worked for me all these years. I know I've read alot of great advice here, learned alot. And Liquid Silk is the best lube ever! Only sold in the UK now I am told, apparently wasn't FDA approved in the USA. Maybe some of my suggestions can help you also! Remember you aren't alone!!
Yes, do not use soap in the shower. All soaps are too harsh. What you need is an aqueous cream (also called emollient). You can buy these online, or since you are in the US you can get one made by cetaphil at most grocery stores or pharmacies like CVS and Rite Aid. And you don't need much, just a tad to clean yourself up. Be very gentle on your rear area as well, because LS can affect the perineum. Wipe gently with wet wipes.
Yes, this is all great advice! Here in the US, the most gentle lube you can find (recommended to me by my OBGYN years ago) is Astroglide. It's water-based and the only commercial lube that doesn't irritate my LS. I'll also sometimes use pure emu oil as a lubricant.
I still have to stress that without the clobetasol, these solutions are just band-aids. I have lived with this condition for 20 years. During a couple of extended times when I thought I could just manage my LS naturally, it came flaring back with a vengeance and I ended up back at square one. I'm at a point where I only have to use the clob 2 times a week (this stretches the tube out quite a lot, meaning it's not as expensive once you get through the initial period).
Before I was even diagnosed, I had started using a bit of Cetaphil to clean that area. I have eczema, so I use Cetaphil to wash my face because it is non-soap and doesn't irritate. It's very gentle. I don't wipe anymore - I gently pat dry.
I use the Cetaphil Gentle Skin Cleanser. It's the only cleanser that will ever touch my sensitive parts aside from pure water! Anything else is too harsh and causes me to dry out and itch.