I really need help. My vulva feels like its on fire but I dont have any other symptoms. There is nothing to see when I look. Have done some research and some people recommend Hydrocortisone 1%, or Coconut Oil or Vitamin E or Vaseline.
I really dont know what to try and feel like crying. I use Vagifem for VA and in the past have used Betnovate RD cream for vulva soreness which was prescribed by the gynaecologist who diagnosed my VA but it isnt helping this time.
Your help would really be appreciated.
there is another discussion on this and has some very helpful information on how to help this condition. look under my name for vaginal atrophy or vaginitis
this is terrible i had it for about 2 years. trimovate worked eventually but took a few weeks. very uncomfortable. coconut oil very good too for soothing. saw a specialist but nobody seems to know why this happens to some women. EMU OIL too quite good but no better than coconut oil you can buy in ASIAN SHOP for £3 no need to pay £18 in H&b
Many thanks for the reply Polly, it is appreciated. I think I will try coconut oil. Can you please tell me how often to use it.?
keep it cool as easier to apply, two or three times aday. trimovate will need a prescription
lynn, I think the cream you were prescribed is a milder steroid than clobetasol which many with Lichen Sclerosus use. I am using a milder steroid for LS, but am using a hormone cream for AV. Have you been diagnosed with LS or just AV? Has your doctor discussed getting the AV under control with hormone cream? You don't want the AV to lead to LS. I was vaguely warned by a gyn several years ago, but there was no specific mention of LS and I sure wish there had been. (Instead she mentioned cancer which really confused me, then she claimed she hadn't said it). The doc did tell me that hormone cream was much safer than taking hormones orally, but I assumed there was a chance the AV would not progress. I could have made a more informed decision about using hormones if I knew more about the serious threat of LS specifically.
If I were you I'd see the doctor ASAP and go with a list of questions. In the meantime I'm afraid I don't know about calming down the symptoms you are now experiencing, but have read on this forum that some women use cold packs. Have you tried any of the other things you mentioned in your post? Good luck and let us know how you are doing.
i need more info - how old are you? Are you going through menopause? Women in menopause do get a lot of discomfort with vaginal atrophy, but that burning sensation you describe is more commonly associated with vulvodynia. Of course the two can occur together because the trauma caused to the tissues by VA can trigger vulvodynia. If a touch of a cotton bud on your vuvla causes pain then your nerves are registering touch as pain and are hyperactive and hypersensitive - that is vulvodynia. Try the cotton bud test - touch all around the outside and just inside and see if you feel pain.
wow so youre saying AV can progress to LS?? Didnt know that! now terrified
Beverley /Lynn
i have had plenty terrible symptoms but never itching. I seemingly have vaginall atrophy and take estriol cream once a week now which I split into twice a week using half each time. Dont really know if better or worse. Sometimes it feels awful as if I have a constant UTI with burning and stinging and when that is at its worst I am up and down to use the toilet at least five times during night. My doctor says estriol cream can have a lot of benefits because the estrogen amount is so small and he says would be lucky to find any in bloodstream if tested. I have not had much success with moisturisers the only thing I use moisturisers for is to lubricate the applicator to put in the estriol cream. I have had a virus (just about everyone has it here) my husband had it too he had it first a d gave it to me. While he got rid of the virus mine turned into a chest infection and got antibiotics for the infection and they have helped the burning and stinging and feels better than its been for a long time and don't have UTI
if I use any kind of perfumed fabric softener it gets worse and if occasionally I use baby bath it gets much worse. I havent had UTI since I Started to use the estriol cream a year ago just now. Not to say it feels good it doesn't and always look at these forums to find out what works for others. At the very start of this getting worse I didn't want to go to doctor and tried things myself like clotramazole cream and that helped but doctor told me not to use it because skin was already thin.
BEVERLEY think you and I are on the other forum too.
Hope you are doing well
Beverley /Lynn
i have had plenty terrible symptoms but never itching. I seemingly have vaginall atrophy and take estriol cream once a week now which I split into twice a week using half each time. Dont really know if better or worse. Sometimes it feels awful as if I have a constant UTI with burning and stinging and when that is at its worst I am up and down to use the toilet at least five times during night. My doctor says estriol cream can have a lot of benefits because the estrogen amount is so small and he says would be lucky to find any in bloodstream if tested. I have not had much success with moisturisers the only thing I use moisturisers for is to lubricate the applicator to put in the estriol cream. I have had a virus (just about everyone has it here) my husband had it too he had it first a d gave it to me. While he got rid of the virus mine turned into a chest infection and got antibiotics for the infection and they have helped the burning and stinging and feels better than its been for a long time and don't have UTI
if I use any kind of perfumed fabric softener it gets worse and if occasionally I use baby bath it gets much worse. I havent had UTI since I Started to use the estriol cream a year ago just now. Not to say it feels good it doesn't and always look at these forums to find out what works for others. At the very start of this getting worse I didn't want to go to doctor and tried things myself like clotramazole cream and that helped but doctor told me not to use it because skin was already thin.
BEVERLEY think you and I are on the other forum too.
Hope you are doing well
polly, that was me who mentioned the AV leading to LS, not lynn.
My current gyn who is also a vulval specialist, told me that lack of estrogen can bring on LS and it had in my case. The previous gyn I had seen several years ago tried to warn me, but did not say anything specific, just vague warnings of possible problems along with the cancer bomb which I could find no info to support. My sister was in stage 4 breast cancer at the time and hormones were not something I was interested in using unnecessarily, especially as I was in no discomfort. Clearly there are younger people who get LS for other reasons that aren't really known, but that's what was told to me re estrogen.
Do you use estrogen cream for AV? If so, I'm not sure you need to be very concerned about LS. Maybe some women get it despite using the cream, but I would guess it's unlikely. I doubt if anyone is compiling statistics which is VERY unfortunate. Unless this condition is given serious attention and study people (women in particular) will continue to suffer.
I plan to suggest to my gyn that she and the other doctors in the group start doing so as it would at least be a local source that patients could reference. I'm curious as to what her response will be. She's open minded and not on an "I am the doctor here" sort of trip, so who knows?
Hi suki, I had the same thought, but can't speak from experience as I don't have vulvodynia.
Thank you for your reply Polly. I have purchased coconut oil and have put it in the fridge. Will use it after by bedtime bath. Take care.
Thank you for your reply. I am 65 years old. I dont have any pain just a burning soreness. I am going to try cool coconut oil.
Hi olive, I think your response to the antibiotic is very interesting. I have posted in the past that it was an internal itch that brought me to the gyn. She diagnosed me with LS which was a shocker to be sure. It was her theory that the LS itch was actually external but simply felt internal. I thought she was way off base, but gave her the benefit of the doubt and waited to see if the hormone cream and steroid would cure the itch. It did NOT.
I requested flagyl which stopped the itch immediately. It comes and goes now, but is very slight. I don't want to take another round of flagyl if I can help it as I don't want to overdo anything, but I do think bacteria is involved. Clearly that area of my body is susceptible.
Not sure why you would not totally avoid any perfumed product. I was already using detergents free of perfume & cotton underwear, but was using neutral PH soap which I stopped using after the diagnosis. Some women recommend using coconut oil as a cleanser, but I am not happy with that. In the warm weather I rinse off during the day with a cup of water, sometimes adding a sprinkle of salt as that seems to be soothing. Hydromol is also mentioned, but I never remembered to ask my gyn about it. She gave me a handout that clearly stated just water.
I am very fortunate in that I have no UTI problems or serious discomfort and have my fingers crossed I can continue this way. The LS is what concerns me more than anything.
Thank you for your reply. I have only been diagnosed with AV and prescribed Vagifem. I didnt realise AV could turn into LS. I am going to try cool coconut oil and if that doesnt help I will go to the doctors. Take care.
Hi Lynn
I was diagnosed with VA over 2 years ago and prescribed 10 mcg vagifem, I decided to come off the vagifem after having the ML procedure due to family history of Bc and blood pressure, I cannot praise the ML enough, I had it done in Sept 2017 and my symptoms have only just returned i have booked in for the ML next week, I tried everything coconut oil helps so does natural yoghurt and ice, my worry is people mentioning lack of hormones leading to LS I have never heard this before..........
Thank you for your reply Kathryn. I am going to try coconut oil to see if it helps. I hadnt heard of AV leading to LS before today. All the best for your ML next week. Take care
vulvodynia does cause a burning soreness. have you tried the cotton bud test?