Hello I am new to this forum and lichen schlerosus.
I was diagnosed a few days ago but have been having a flare for a couple of years now (since summer 2013). It was mainly itching so I had many misdiagnosises with thrush. Finally was given eumovate for eczema which relieved the itching temporarily until the final diagnosis of LS and so have been using dermovate for the past few days. Hardly itching at all now after this treatment. Main problem is just the pain when having sex as I believe maybe my vagina has narrowed a bit.
I have been using dilators which has improved the problem a lot. But I think I need to invest in some bigger dilators as the ones I have were the cheapest I could find so only go up to 30mm diameter, which I don't think is big enough (I am 18 years old and a student so couldn't afford ones for more than £20).
I have some questions about fusing as I have read a lot about it on the internet.
My main question is does fusing happen to everyone with LS?
I am only 18 so the thought of fusing happening terrifies me.
Considering I think I have caught it early as I don't see any fusing that has happened already (only a few small white patches and purple ish colour to my vagina), if I am using my steroid ointment and dilators to improve the condition and taking precautions then will this stop fusing from happening?
I cannot tell from research if it is something that happens to severe cases of LS or something that happens when untreated.
I am hoping if I do everything I can to help with my LS - which I don't think is as bad as a lot of people's due to not much pain or itchiness anymore and vast improvement lately - then maybe fusing will not happen to me.
If anyone has any info they can tell me regarding my question then that would be really appreciated
Thank you in advance for your help!
Kasia
Oh I also discovered I had LS when I was around 4 years old. So it was inactive for a good 12 years and now has come back. Don't know if that will help anyone but thought I would mention it!
Do you buy medical dilators or smth? Probably dildo is cheaper? 
I don't know what smth stands for haha sorry I bought some medical ones they were £20. My mum said the same about the dildo haha but I am worried maybe that would be too big. I reckon it would be cheaper though I think I might do that 
Smth is something shortly 
) of course, your mom is right Use coconut oil, dear, women here say that it helps a lot for fusing prevention and cure.
Hello Kasia
I'm so sorry that you've joined us, but great news that you've caught it early. If you are in the UK you can get dilators on prescription. I've lost the leaflet but I think the firm is called Owen Mumford, or something like that (maybe I'm getting confused with the band). My doctor checked and then prescribed them for me. They would normally have been about £45.
Good Luck!
Ah thank you for your reply. I just looked up the Owen Mumford dilators you can get and funnily enough those are the ones I managed to get for £20 off Amazon! They are £50 on that website though. I find the biggest one is not quite big enough diameter wise as it goes to 30mm and I discovered others go to 35mm which I think is what I need.
Thank you for your reply!
sounds like you're really onto it! and also have had great advice...so may i add my good wishes to you and hugs x
Thank you! You have been a great help also as you've commented lots on my previous discussion. Thank you for that and I hope that all is going well for you x
If you can keep the itch and irritation down fusing is unlikely.
Thank you so much. That is what I needed to hear :-)
oh thank you kasij.
so nice! well i just shed a little tear due to your kindness which i really appreciated.
I think i have become somehow invisible since getting this. So glad you're on to it and have had improvement. Me too! But its up and down. Though I want to FEEL so i'm letting myself go through these emotions and just noticing them. Once i m more in control I'll prob take kate's advice and do something for others. I've been thinking about a course in herbal medecine to add a complementary side to my work. x
I really think you should do that! You seem to know your stuff really well and are amazing at helping people. You've definitely helped me a lot. Especially when I was first diagnosed, your answers and comments have helped me become less sad about it all and more determined to make it better. So I thank you a lot for that.
I'm glad you're letting yourself go through the emotions. it is important to do that because you don't want to buckle it all up.
I consider myself lucky that my case is no where near as bad as a lot of the women on here. I am hoping that with the use of the steroid ointment & dilators, soon things will be back to (almost) normal. Fingers crossed! x
Sorry to interrupt this conversation, but where would I buy coconut oil?
Thanks
Barbara
Really! Thank you so much.
Yes i'll get on with looking into it. What about yourself? What are your plans? Where do you go from here? What would you like to do? x
Grocery store. It's an item used for cooking.
Fusion was going on for a long time before diagnosed. Treatment was ill explained at the time. You are doing much better already.
Keep things lubricated down there with for instance coconut oil. I myself have done well with the baking soda rinses and baths. Other people thrive with aloe vera and witch hazel spray. You'll have to find out what works best for you.
Diet has helped as well - no sugar, gluten, alcohol, most dairy products for me.
Also - perhaps have your estrogen level checked.
On another forum on this subject and also oral lichen planus there is discussion that it could be a vitamin D deficiency. Several people including myself (just got back from sunny South Carolina) noticed symptoms subsiding or disappearing while they were on holiday...sunshine is what makes your body make Vitamin D. The LS on my legs went entirely away...private area has been getting better with the aloe vera gel...so haven't noticed much change there. But in the last few days I started vitamin D3 5000 IU in the morning and another 5000 at night. The oral lichen planus in my mouth has already shown some improvement after only a couple of days. Some on this site supplement already with D3...but are they taking enough? Here is what I found on the symptoms of vitamin D deficiency...note: what we have is an auto-immune disease...plus I have also noted many indicate some kind of depression along with this disease (which of course is depressing).
Symptoms of Vitamin D Deficiency
Vitamin D isn’t an optional nutrient, our bodies need it, and without it, problems can arise. Many people go through life with nagging aches and pains, allergies, malaise, and a general lack of vitality. Such nonspecific symptoms can be the result of one, or several factors, and vitamin D deficiency is one of them. Specific symptoms related to vitamin D deficiency include:
Muscle weakness
Joint aches and discomfort
High blood pressure
Inability to concentrate or focus
Urinary incontinence, bladder issues
Constipation
Headaches
Cold/flu, immune system decline
Mood disorders
More serious diseases linked to vitamin D deficiency include:
Osteoporosis
Heart disease
Autoimmune diseases
Periodontal disease
Gout
Diabetes
Obesity
Psoriasis
Neurological diseases
Well to be honest I am just trying to hope for the best and not think too much of it. Hopefully I won't have any of the fusion happening. It seems that all I have are some white patches and a slight change of colour. I didn't ever get much splitting of the skin unless I itched and the main problem for me was the painful sex. I definitely consder myself lucky compared to some of the people on here.
I think I will continue to use the dermovate for a few months as well as the dilators and see if that improves. Hopefully everything will go back to normal after that. If not then I will look into changing my diet a lot and estrogen.
I think I will also invest in the coconut oil as that's been recommended a lot.
I just really hope it doesn't get too bad as it's already causing me a lot of stress and I have just started university so it's not very nice timing. I also feel bad for my boyfriend and don't want it to affect our relationship. He is so lovely about it all thankfully x
Thank you so much for your help. I am definitely going to invest in some coconut oil. If that + dermovate + dilators does not make things almost normal then I will be looking into estrogen levels and changing my diet