Vulva soreness and burning
Posted , 10 users are following.
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.
0 likes, 33 replies
polly01044 lynn41704
Posted
wow so youre saying AV can progress to LS?? Didnt know that! now terrified
beverly52803 polly01044
Posted
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?
olive8 lynn41704
Posted
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
beverly52803 olive8
Posted
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.
olive8 beverly52803
Posted
Beverley since writing the above and re antibiotics. I had to stop the antibiotics with a couple of days left because it was a different feeling that turned out to be thrush. Well i have never had thrush before so the doctor gave me a pessary tablet and applicator to push it as far into vagina as possible. That was a nightmare to get where it was supposed to go. Anyway I don't think it was very successful because my symptoms got worse and last night the pain and burning was the worst I have ever had. I was up and down to the toilet time and again the burning and stinging getting worse all the time. The night before I had my usual estriol cream. Anyway today has been a nightmare with all the symptoms of atrophy coming back only worse and now I was told I should not have used the estriol until after the pessary had stopped working. It has been a complete nightmare today I contacted my doctor and that was a waste of time Monday is very busy at our surgery and the pain I was in was awful and the running backwards and forwards to the toilet was bad. He didnt talk to me it was a nurse and of who I knew more than her. Anyway I use the estriol again on Wednesday and was told just go ahead and use it. W.hat a nightmare this has been what would you or anyone else have done. I Have used drapolene cream once or twice and it seems momentarily (120 seconds) to calm it down.
I got fragrance and dye free and everything else free yesterday my daughter got it for me in COSTCO so am starting to use it on my clothes. Hope you have some suggestions for me. It was definitely the antibiotics that has caused all this.
Hope you are still doing well.
beverly52803 olive8
Posted
olive, I am sorry you are going through this. "now I was told I should not have used the estriol until after the pessary had stopped working" seems to explain why it happened. Are you dealing with one doctor or two?
Whoever prescribed the thrush med should have checked your records or simply asked you what you were currently using if using them both was going to cause such an extreme reaction. I wouldn't have known not to do it either, but I probably would have mentioned what I was using because I am so paranoid about all of this stuff. I tend not to trust doctors when it comes to details.
I can't make sense of why it did cause the severe stinging as I thought estriol was mild and fairly safe. Sounds like the two creams together possibly formed some kind of chemical reaction(?) I would definitely ask so you will no to avoid a similar reaction in the future with other creams.
Last winter I sent away for an ointment that UK women on this site recommended to balance PH. I had been experiencing a fleeting internal itch and thought it may be bacterial. As I didn't have access to care (my insurance was limited to one state) I thought this ointment could calm the itch till I got home & saw a doc. However, that ointment stung horribly. I'd never experienced anything quite like it. As it isn't sold in the US I brought it to show the gyn when I did get back and she said it was much too harsh for someone with AV and thinning skin to use. Lesson learned!
Unlike you, my AV has never caused UTI problems. Maybe it gave me a false sense of security; thought I could just age naturally without taking any chances with hormones. So instead of developing UTis I have developed LS!
If I can find the thread I am going to PM you with the name of an antibiotic Ruth said helped her with her UTI symptoms. Do you remember her? Hope I can find it. You might want to search as well.
Beverly
olive8 lynn41704
Posted
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
Suki_girl lynn41704
Posted
I think the issue here is that women are warned about the side effects of HRT, making us cautious about using it, but it seems we are not warned about the complications that can result from Vaginal atrophy if we do NOT use HRT. And some of these complications are very difficult, if not impossible, to cure, such as vulvodynia and Lichen scelerosus. We need better advice and information.
beverly52803 Suki_girl
Posted
Yes, I'll second that. In writing with specific problems named and described...with photos...and links...as a handout!!
The first time I had ever heard of LS was on this site. Never from a doctor till diagnosis.
I still may have chosen not to use the hormone cream 3 years ago because of my sister's estrogen dependent breast cancer, but at least I would have known specifically what was possibly lurking in my future. I do know the doc told be creams were safe, but as she was prescribing Premarin that was a real turn off to me. Didn't know there were options.
Hindsight is 20/20.
Laura3333 lynn41704
Posted
Hi, I dont know your age, but try using Aveeno cream or Oilatum, as a moisturiser and see if that helps. You could see your Dr about estriol cream to apply on the outside of the vulva.
lynn41704 Laura3333
Posted
Thank you for your reply Laura. I dont think I can use Estriol cream because I am using Vagifem. I am going to see my GP later today to discuss vulva moisturisers. Take care.
Laura3333 lynn41704
Posted
Yes you can use estriol on the vulva whilst using vagifem in vagina, double pronged attack. Estriol is so low in oestrogen, its quite safe.
olive8 lynn41704
Posted
like you I have vaginal atrophy or vaginitis. My doctor just said when I said I always feel as though I have a urine infection. He then said post menopausal woman get this condition gave me estriol cream and said I would need to use it for the rest of my life. He told me how much and how often to use it - end of story. Well I use it once a week now but sometimes the burning and stinging is there and sometimes up to bathroom five times during night. Recently I had a virus everyone here had but mine went into a chest infection had to take antibiotics and they gave me thrush consulted the doctor who gave me a pessary to insert into vagina and cream I had my usual estriol cream the night before. Well the next night after the pessary was inserted I have never felt pain like it I honestly couldn't attempt to sleep I was up and down to toilet every twenty minutes and the pain and stinging was unbelievable I was holding onto the rail on the wall and the edge of the sink I could hardly stand the pain. The next day it was worse I could hardly sit the pain and burning was constant. I tried everything the cream I was given was worse I have moisturisers I tried them all. THEN I remembered someone on here used drapolene so at the time I Bought it but never used it well the relief was instant so am still using it dont know if it would help you but you could try it it. Today it is still better at least I can sit. I know what you are going through abd it is terrible -,try the drapolene
HOPE you feel better
joylovefun lynn41704
Posted
I've had this issue for a number of years upon becoming menopausal. coconut oil was bad for me as there was initial lubrication and relief but a profound rebound dryness. a midwife told me a water based formulation is better. i found and have been using "yes yes yes" water based gel and omg what relief. they now have individual application pods that help get the gel where you need it. it's a UK product (i live in the US).
Suki_girl joylovefun
Posted
water based lubes sting me, but i know others get on with them. Yes also do a water based vaginal moisturiser now. if women dont get on with these they also do a lovely oil based lube that i use.