Vaginal lichen

Hi Donna,

dont worry about the crazy label, weve all got one, its part of the treatment!

Donna, dont know about pain in ovaries, people look at me as if I am crazy when I say I itch worse after I drink tap water, coffee, tea and orange joice, and chocolate! Maybe thats just me?

Some doctors equate not being able to have sex with not wanting to have sex.....infuriating I know. Because you cant drive a car dont mean you dont want to go anywhere!

For relief from itching try pure coconut oil, must be pure, plain coconut oil, health foods and Sainsburys sell it, its cheap too. Also Donna, try changing your towels, if you use them, to ones without the powders and chemicals in them, the cheaper ones are sometimes better, because they dont contain these. If it says it has super absorbent gel, steer clear, it will irritate you.

Use dermeze for moisturising in between using your main ointment. Mine is Advantan fatty ointment. I had a bidet which is wonderful. Make sure you are seeing a specialist or even a clinic that addresses this condition specifically. I do not where you are but here in Melbourne we have such places. 

I have oral lichen, private area and legs. Many of us have been misdiagnosed for years so we understand how frustrated you have been. For oral lichen I use a tom's of maine toothpaste called propolis and myrhh with a little bicarbonate of soda. I was using pure powdered charcoal from bamboo which also works...but have found I can do the other which is much more pleasant. I always do a salt water rinse after brushing. You will find certain foods will aggravate your symptoms so it's good to keep a food diary for two weeks and write down any changes to your symptoms after you eat certain foods to help find the irritants. Many say chocolate, coffee, tea and citrus seem to be big culprits.  If you are interested in more natural means to help control the disease there are some things you can try. I put witch hazel in a spray bottle and use it for cleansing after toileting (some use a couple pinches of bicarbonate of soda in about an 8 oz. bottle to do the same thing with good results). The witch hazel may sting a bit, but that goes away quickly. It is good for healing and conditioning the skin. For the itch in the private area I have good luck with 99% pure of higher organic aloe vera gel...you just need a little. It stops the itch and also improves the skin. The organic coconut oil is also a good moisturizer and has healing properties. I have just ordered my first jar of manuka honey. On another forum a woman has kept her vaginal area clear of lichen by rubbing a pearl size amount well into the area each night before bedtime. Manuka honey has well documented healing properties.  And if it doesn't work for you...you can always put it on your English muffin in the morning. These things are worth a try...I've done a lot of experimenting with my lichen and these have worked well for me.  Keep coming back here to this site as we are all sharing information and like you looking for answers.  Hopefully we may someday stumble upon a cure. 

Hi Donna, after 3 years of hell, I was diagnosed with LS and vulvodynia.The vulvodyna was like a needle being pushed up my uretha. (mainly at bed time)I didnt know I had a rash or LS until my Gynae did a biopsy. I was started on Dermovate cream and Amtrpitilin Tablets, the Ls cleared but the vulvodynia continued, so I was weaned off the amtriptaline and started on Pregabalin. I had quite a few side effects including swelling legs etc. I went on Holiday to Devon for a week, and low and behold all my pains and burning cleared. I thought at long last something is working. After being at home for 1 HOUR all my problems came back with a vengance. The only thing I worked out was our WATER. in Devon they do not have flouride in the water where I live we do. I started using bottled water and bought a toothpaste with no flouride in it and all the vulvodynia and LS seemed to go.  I have now had a water filter fitted in my house. I do occassionally get a burning senation   from the LSso, I start the dermovate for a couple of days to clear it. After I also use a baby nappy rash cream with zinc in to help heal the tender and ripped skin the dermovate caused. I was weaned off pregablin as they thought I also had colitis and fibromyalgia since stopping the pregablin all that has cleared also. Taking Zinc and copper tablets also see to help with the healing.

Hope you find this useful I wish someone had told me to try bottled water for a week I would have tried it. Good luck you are not going mad.

Hi Donna, I have LS down below and have just been told by an oral consultant that I have agressive LP orally - biopies will be done to confirm the OLP in a few weeks. Orally, I have already noticed that Chocolate, Tea, Coffee, Alcohol, (sigh) citrus fruits, vinagrette dressings, tomatoes, anything spicy and anything crunchy are very unpleasant, so you're not alone. To be fair, the consultant mentioned all these things to me as things to avoid. I'm on six soluble steroid tablets daily, which have to be dissolved and held in the mouth for five mins at a time, just to try and calm down the condition, and then we'll see. Lovely!  Down below is relatively ok at the moment with maintenance steroid cream, but I had a lot of trouble with the original diagnosis, so you're not alone there either!

I would suspect that your gyn might be right in that your ovarian problem might be a different matter, as I havn't heard of either LS or LP affecting them. At least you seem to be in knowledgable hands at last. Keep posting, we're all here for each other.

Hi Donna,

I get vulval itching when I eat or drink all of the above, and have had doctors in the past looking at me as if I am a nut case! Also, do you get acid reflux and burning in your oseophagus after you eat or drink these things? I find that bi carb stops this, a quarter of a teaspoon in half a glass of water.

Relieved I am not alone on this one, but do try this, get a store of cheap bottled water in, and only use this for drinking, and also in your drinks, tap water causes problems for me but bottled water is fine