I've had vulvodynia diagnosed and inactive lichen sclerosus. I have tried all steroids, creams lotions and potions. I cannot sit for any more than 15 minutes at a time. I can have great discomfort of rawness and stinging even when walking! I use coconut oil to moisturise and hydromol to shower. All medications tried have not worked and have had horrendous side effects . I have been referred to a chronic pain clinic who has recommended a epidural type nerve block. Has anyone had this or similar? Has anyone any other advice?
Hi Alison,
i was diagnosed with vulvodynia alongside my LS. I've found mine appears to be worse when I eat dairy foods and have excess sugar. I've drastically cut back on dairy and try and eat minimal sugar and the symptoms have reduced.
Have you tried looking at your diet?
Samantha
Hello
I was diagnosed with ls and vulvodynia at the same time, at first my doctor just gave me dermovate treatment but the pain was just too much so I kept going back to my doctor and then she gave me a course of pills (unfortunately I can't remember the name) to block the nerve endings and in a sense kill them off, and it actually worked!!! I have been having some problems lately with the pain recurring so I'm thinking it was just temporary or new nerve endings have made an appearance but those few months where I had no pain were complete bliss. I hope they can help you find a solution to the pain relief you are looking for.
I had pain and soreness and a feeling like pins were sticking into me while walking for about 2 years following a botched procedure for psoriasis (skin kept splitting) which has now been diagnosed as lichen planus. The doctor prescribed Lidocaine ointment which blocks the nerve endings so you dobn't feel pain, but it's not a permanent solution. I find moisturisers e.g. Vaseline which coats the area helpful, and keeping the area dry with pads with no bleach, also washing down there only with water, then coating the area again. I did not find coconut oil thick enough to form a barrier. I only use steroid cream if the area is particularly sore.
Hi Alison
Its awful I know I have been using Organic tea tree antiseptic ointment for some time now and works for me plus after showering I use vaseline and use it each time I have a wee. It helps to stop the acid burning of your urine and keeps you moisturised too . It may not work for you but give it a try the tea tree gives a cooling effect like you've sat on ice and it helps to heal. Best of luck xx
Alison, what do you mean by inactive lichen sclerosus? What are your symptoms? What medications have you tried? Have you changed your diet at all.
Hi alison
I also suffer with vulvodynia and ive been suffering with burning for the last 12 months and its really affecting my everyday life.im currently takin lyrica and amitriptyline and its not helping.im waiting to see a pain specialist and im really hoping he can help me.does the pain specialist you saw think that the epidural nerve block will help?
Hi, he has said he has performed this with some success so it's worth a try, the downside will be it won't be long lasting . I too have been on lyrica, waste of time. Side effects not great, withdrawal even worse, so take it easy! When you stop them. I cannot link my discomfort to diet or anything else. I can only sit for short periods of time. Feels never ending.š©
Hi alison
I havent even thought about the withdrawels is it really bad? Are u considering having the nerve block done? I started early menopause and this is when it all started for me.i totally understand when you say its neverending it takes over your life
I'm just waiting to hear when I have appointment for day surgery. Withdrawal was bad, I was so ill but I didn't do gradually and should have. I was only on them for 3 weeks.
Ive been taking lyrica for about 3 months now i dread the thought of the withdrawels.im hoping the pain specialist will be able to help i feel ive exhausted every avenue avaliable at this stage.i hope you wont be waiting much longer and that you get relief from it even if its not long term you never know it might not reoccur with the help of god...xx
Fingers crossed, I will keep you posted!
That would be great alison.thanks
Hello Alison.
This thread is so old, I wonder if youāll pick this up.
I am just turned 40 and have been suffering with pain/burning in my opening down there that is brought on by anything entering me for 2 years. (Basically sex or examinations - not always sex related)
I got diagnosed with mild LS & used Dermovate for 18 months by a dermatologist, but it doesnt seem to stop it. Calms it down a bit.
The gyno said I have V.V so I went to pain clinic & they want me to go on Lycra too (Pre-Gablin in the uk). I have not taken it yet bc I am scared to. Is it really hard to come off? What do you mean by withdrawal was hard? Can you elaborate?
I have seen HRT clinic that put me on patches but they made my vision go blurry and I was too tired to function, so I came off them no success.
I tried dilatorās from my gyno, as he thought I have vaginismus, but yesterday a Ā£120 trip to see a specialist gyno-physio told me no, I donāt have vaginismus and allās ok with muscles down there.
Its defiantly my skin that is sensitive to touch outside not inside. But I look quite normal.
I have had Drās tell me in a frustrated manner ātheres nothing wrong with you!ā and hurt me down there because you cant see it. One Dr even split my skin in frustration and I had a fissure that killed for weeks.
I feel at a loss what it is, and have now found myself coming online for help. I am hoping you have found answers and maybe can share with me? I would be very grateful for knowledge from somebody whoās been here before.
Along side the questions on the nerve pain block medsā¦ how are you now? Are you well? Did you find answers? Are you better? Is there anything else I need to look into? What worked for you if you are better?
I have stopped dating because I cant be intimate with anybody and I am very lonely.
Any reply would help me right now. Iām losing the plot.
Thank you for reading this, if anybody does.