Can anyone help me?

Check and up your D3 & B12 level, cut your carb to minimum and no sugar, no refined processed food items. Go gluten free diet, you will see the improvements. Check for your thyroid and liver function and consult with functional medicine doctors.

hello Mai, your story is heartbreaking and I'm not sure I can advise on your condition because we are all different. However, it sounds as though you have not been helped by the medical professionals thus far. can you ask your GP to refer you to a vulval clinic to see a dermatologist? Try to assert yourself without getting emotional (hard I know) and push for an expert to see you, to examine you, to confirm diagnosis and to give you appropriate medication and advice. please dont give up: take my advice. I send you love and best wishes. Caroline

hello mai, If I could reach through my computer screen and give you a hug and tell you not to give up I would. Sometimes this disease seems hopeless and we do indeed feel helpless..... for everyone of us, our individual situation is different. The key seems to be knowing what works for us, and how to handle flair ups. Wearing white cotton, 100% cotton, underwear is essential. When things are bad, I change mine twice a day. Cleaning with water after each urination really helps. Lubricating after each void is essential. There are many things to lubricate with. Emuaid works best for me. Coconut oil, aloe vera work too. Steroids need to be massaged in and used 2 times a day during flair ups. Cold compresses also help with the burning. Dietary changes helped me a lot. Sugar seems to be a big factor, so I try not to consume much. If you can eat gluten free it may also help.

Just know you are not alone, and this forum is awesome. Hoping you find relief soon.

Mai, I'm sure you must have done research on the internet by now. Have you tried any of the suggested treatments? Has your doctor recommended any of them? Do you live where there are specialists?

Are you attending a college and making friends? Being too isolated can make things worse.

I wish you the best. Don't feel there is nothing that can be done. I'm sure there are doctors who can help. You just have to find one. In the meantime relaxation techniques might help. You can find those for free online. Do you have health insurance?

Mai, I'm sure you must have done research on the internet by now. Have you tried any of the suggested treatments? Has your doctor recommended any of them? Do you live where there are specialists?

Are you attending a college and making friends? Being too isolated can make things worse.

I wish you the best. Don't feel there is nothing that can be done. I'm sure there are doctors who can help. You just have to find one. In the meantime relaxation techniques might help. You can find those for free online. Do you have health insurance?

If it is LS, try all the suggested moisturisers from this forum: Emuaid, Emu oil, coconut oil, castor oil, aloe vera gel mixed with turmeric. Swap them around as LS can get used to each of them and then they don't work as well. Try borax to swab with - it is very soothing. Epaderm to wash with too (emollient). Don't use soap.

What does your doctor suggest for the pain? It seems you should at least have something for that. I'm with Caroline, you need to make a fuss and get a referral to a specialist. Also remember that if it is actually LS, you can go into remission, so you may not continue to suffer. There is some light at the end of the tunnel, take heart.

Dear Mai,

I am so sorry for your suffering, especially at such a young age. My advice from living with LS for more than 40 years (since I was 13) are:

1. Request a well-working pain medication if you don't already have it. Living with constant pain makes you depressed. Doctors often don't understand that LS is a very painful condition.
2. Try not to let LS/vulvodynia consume you. If possible, exercise and try to do as many every day-life things as possible. I know it is difficult, but if you will manage, you will feel better.

I also want to give you a big hug. There will be better times as well. LS goes up and down and can be calm for periods. At your age, I felt in despair and it has and is not always easy but it is possible to live a good life with LS.

Take care and be kind to yourself!

Hi mai, can you get to see a Vulva specialist? it sounds like you need a fresh eye on whats going on with you.

At your age it is even more important that you have people around you that can advise you with your LS. The fact that you are using the steroid cream daily and still struggling is a concern.

Most of us with LS use the steroid cream when initially diagnosed to get things under control and then usually for the occasional flare up, so you see it is not a good idea to use it every day.

Have you changed your diet at all? Sugar has to be watched, because too much sugar can bring on some terrible flareups, I wish it wasn't the case but it is true for many of us. For some of use going Gluten free made a big difference. Also I have now completely stopped taking any dairy products as for me it is another trigger. There is no need to eliminate everything at once, just cut down on sugar dramatically and see what happens, it may be that is the only thing you need to do to get your symptoms under control as we all react differently to things.

Signs of a flare up are..

white plaques of skin on and around the vagina

itching

paper like cuts on and around the vagina and in the crack of the butt

sores

blisters

burning feeling

What exactly are your symptoms?

One other thing, and that is that you will go into remission at some point which could last years or months, that's what usually happens when you are diagnosed very young.