Itchy, raw, vulva, nothing seems to

Women's health
1

I suffered with vulva problems for 7 months. I promised myself that if I got to the bottom of the problem, I would share the answer with the fellow sufferers on the internet, since I myself spent hours reading in the hope I would find an answer. I hope this helps someone.

My story; 7 months ago I got the itch down there. At first I thought it was the skinny jeans I was wearing, but it didn't go away. So off I went to the chemist to buy canesten cream for thrush along with the pessary. 3 days later and no improvement. By this time I was getting really sore. I thought perhaps it hadn't worked so I used another treatment. Still no joy. So I figured I would see the doc. At my appointment she did not examine me, just took it on trust that I knew I had thrush.....she gave me 14days worth of pessaries! 

By day 9 of using them I was raw! So back I went and I was examined. Swabs taken. I was really sore and cracked down there but was prescribed a mild topical steroid. Swabs came back clear. But still I was raw after the cream. In total the GP ended up prescribing 3 different steroid creams none worked. Eventually I paid £200 to see a specialist since the GP felt I had 'a skin problem' down there.

He told me I had eczema and for months I believed him and treated it with steroids, emmolient, avoiding shampoos etc.

but it just wouldn't go away. My symptoms were strange. I'd have days where it was really bad and days where I barely noticed it. I would feel raw when I walked, couldn't wear anything tight, sometimes I could barely where underwear. When I layed down it was fine but the minute I got up in the morning the ache/burn/itch would start.if I got sweaty from stress it would be terrible and I felt so depressed. There was just no explaining it. I spent so much money changing shampoo, underwear etc.

after nearly giving up I decided to go back to the doctor and thank heaven I did. 5 doctors later and a great doctor to whom I'm eternally grateful diagnosed me immediately. I had vulvodynia! I was doubtful at first since I had seen so many doctors with no clue, but she prescribed amitryptiline . Now a month later I'm getting back into leggings and jeans!

dont give up. There are good stories out there, keep going back to the doctor. 

2

Hi there, I've just read your post having been suffering myself since the beginning of September. I just wondered what it looked like down there when it was bad. I have patches of redness and sometimes its a bit swollen. My symptoms are mild itching, soreness - a sort of raw feeling, aching from the mild swelling and a burning feeling. I also get a faint tingling sensation at times too. I've had a biopsy - came back negative and I've tried eumovate, metocin (stronger steriod), another very strong steriod with an anti fungal agent and now I'm on Trimovate which has a mild steriod, anti fungal and anti biotic. The steriods sort of keep it under control but never completely. I, like you, have good days and bad days and cannot wear trousers let along skinny jeans. Sex life out the window too :-( Luckily very understanding husband. My dermatologist (who specializes in vulvas) did mention vulvodynia but said you tend to only get pain and not itching with it. So I'm interested in your story. Do my symptoms sound like yours? Was it a cream that was prescribed or tablets? Thanks for your input smile 

3

hi 

Sorry to hear that you are suffering. It will get better, just keep on annoying the doctors.

How did it look 'down there'?- exactly as you've described. Sometimes a bit angry, red patches, a bit swollen. But to be honest, now looking back I was so obsessed with whether it was getting worse or better and all the creams the doctors kept giving me were most likely responsible for this. Sometimes the creams seemed to work for a few days, but the feeling would always return. I've never spent so much time 'looking down there!' - it was so upsetting

How would I describe the feeling of Vulvodynia?

Exactly as you have and yes, that does sometimes include itching!

i would have, rawness which moved around, irritation, a constant awareness of my vulva. Sometimes I would feel almost bruised down there, I'd get pins and needles feeling. I don't know if you've ever had long hair (on your head!) and had it tied up tight all day, but when you let it down your whole scalp feels sensitive....that's exact how my pubic hair area would feel. Any pressure, especially from jeans or even leggings could make me uncomfortable. Notice that  say 'uncomfortable' and not painful...it's not painful it's just really annoying, like going round all day with a headache in your vulva! I eventually saw a specialist who wrote down 'cheese grater' on my notes which I feel effectively summed up what it felt like to wear jeans,

From what you've said it sounds just like you've got vulvoynia and that can be crippling, or merely annoying. My advise to you is:

1. Go and see another doctor (I had to move surgeries) The minute I walked in the Doctor said that my symptoms were classic vulvodynia and she couldn't understand why the doctors before hadn't spotted it.

i was referred to a specialist at a local hospital. I took amitryptiline for a while but they made my heart race. Things have improved and I now manage with a few lifestyle changes. I still have the odd bad day, but mostly they are good!

Things that really make a difference:

Stop using fabric conditioner on your knickers. Although vulvodynia isn't caused by the chemicals your nerve endings are ultra sensitised and so easily irritated. I now wear slightly 'crispy' knickers, but if any go anywhere near fabric conditioner, by the end of the day I will have a flare up that lasts a week.

Wash your hair seperate from your body. Annoying, I know, but it really helps as it means that you don't get any soap residue down there. I lean over the bath to do my hair

Ease off on the skinny jeans. I only wear jeans now about half the month and I used to live in them. I'm able to wear leggings now and softer trousers. I will still always change into something lose fitting when I get home.

Avoid stress and anxiety. Stress makes it sooooo much worse for me. Relax. I actually now take a low dose of Prozac, not because I'm depressed but because it makes me more chilled and so have less flare ups. 

Have ven you ever had a bad back? Odd question I know, but my vulvodynia coincided with a bad lower back that just started one day when I got out of the car. I've since discovered that there may be a link between this and vulvodynia. Apparently all the nerves the the pelvic region run through the lower back and can become irritated. The specialist recommended that a saw someone who does something called 'body stress release' and helped to release the tension in your back. From the first time I went it made a big difference, although I need to go back evey three weeks at the moment. She's had a lot of success with ladies with vulvodynia. and it has really helped me. (Not on the nhs)

i would love to be able to give you the 'magic  bullet' for this, but what Ive learned over the past year is that this is something which requires you to tackle it consistently from all angles. It's not going to go away over night but IT WILL GET BETTER! You will have longer times between flare ups, you will be able to wear what you want and you will stop spending all day on the Internet trawling for the answer! 

I hope that helps... Please ask if you need any more

good luck 

 

4

Wow! Thank you for your long and very informative reply. You sound exactly like me.

Coincidentally, since I replied to your first post, my doctor has said that she thinks I have vulvodynia. She's prescribed low dose anti depressant (Nortriptyline) which is basically the same as the first one you took but has less side effects .... apparantly! She's also prescribed a topical pain killer - did you use this and if so when/how and was it helpful?

Do you use a moisturizer?  I'm using a very gunky thick one (diprobase) which is great but leaves a big mess on my pants and I think the ensuing dampness is a further irritation.

Another question, did you go straight off the steriods when you were first diagnose? Did it make things worse for a while? I'm a bit nervous about this. I know they are not helping me get better but they do dampen down some of the inflammation. 

I shall take you advice about the fabric conditioner and washing hair separately - makes absolute sense. 

Do you have the name of the back person? I do have back problems on and off which radiate to my groin so I think this would def be worth a go too. I could then contact them to see if they know anyone in my area who offers the same treatment.

It's so great to hear from someone who is managing this - I've read a lot of depressing stories on the internet. 

Thanks again for your help!

5

Hi everyone,

I also suffer from a painful itchy vulva. It's been going on for almost 2 years now, and I've been to a lot of doctors who all gave me different diagnosis and medication that didn't help (yeast infection, BV, Lichen scelrosus ( a biopsy showed after 6 months I didn't have),...)

I've been feeling very depressed because of this. I can't wear jeans anymore, sex is painful, I'm uncomfortable all the time.... I just want to find a solution and get my life back.

I went to a dermatologist last month who ruled out LS (I was told before by my GP that I have this and was treated for it but it didn't help) and now prescribed me protopic to use. She said she had some succes with it with other patient who had the same symptoms (chronic inflammation down there).

I've been using it for a week now so I can't tell yet. But for now it seems to make things worse; it itches and burns a lot more than before. I know it could be a side effect of the protopic but was told it would dissapear after the first couple of days.

I'm worried it's not getting better.

Did anyone here use this ointment for this and had succes with it?

How long did the side effects last? Is what I'm experiencing normal for the first week?

I would be greatful for any help or advise you can offer me. Especially from someone who has used the protopic...

6

Hi there,

I read your post and it sounds like you suffered something similar to what I have currently. I'm 23, have had an itchy vulva for 4 and a half years and I'm at the end of my patience with finding a cure.

My symptoms are constant itchiness and burning sometimes after intercourse. I've had to make many changes to the clothing I wear but now I am struggling to even wear underwear.

It started from a thrush infection which didn't clear up with canesten cream or fluconazole oral tablets. I then went through several doctors who prescribed me different topical steroid creams which didn't help. I was then told by gyno#1 to stop using all topical creams (including aqueous cream, a plain moisturiser) and take a weekly fluconozole tablet (not that I had a thrush infection, just to make sure I didn't get one again). Three months later after no change gyno#2 recommended I make several lifestlye changes to fix the problem. I now don't wear leggings, jeans, or nylon tights, use a fragrence free plant-based washing powder and no fabric softener, don't use store brought lubricatant (I use coconut oil) or latex condoms, and use only water to wash the area. He also prescribed me amitryptaline (40mg) at nighttime and fluconozole tablets to continue taking weekly. Following no change a year later I saw gyno#3 who essentially told me the same thing but also prescribed a topical steroid cream which, once again, had no effect. She has told me to also do things like wash the area with salt water, wear panty liners to absorb moisture in the area, and put olive oil on the skin to stop discharge sticking to the skin and irritating it.

My symptoms have literally not changed since 2010. All swabs come out negative for thrush every time and my smears are clear.

I have spent so much money trying to figure out how to get rid of this and have literally spent years trying each of the doctor's suggestions, and I'm in tears writing about it. Has anyone done anything I HAVEN'T done?! Or is there anything major that I'm possibly missing that could fix the problem? Or anything that I'm doing wrong? I just want to wear skinny jeans again!!!!

7

Hiya

I'm so sorry that this has lasted for so long! I am sure you will get back into those skinny jeans, just be patient. If you have whatever the hell I've had, you WILL get back to being able to wear what you want...but with a few totally bearable lifestyle changes.

Sounds to me exactly the same as what I had and that you've done all the right things with fabric conditioner etc.

I can't remember what I put in my first post but the first turning point for me was the amytriptiline, that helped briefly. But as time went on the effects wore off and I got palpitations. So I had to stop taking it.

Do you currently have or ever had problems with lower back pain? The reason I ask is that a vulvodynia specialist said to me that they think there's a link between the nerve that runs through your pelvis and vulvodynia. She had had some success with people who had physio/body stress release done on them. The idea being that the nerve supply to the pelvic area is pinched and causes the various symptoms we have/had.

I had always suffered on and off with my back and the discomfort seemed to coincide with this. It also explained the good days/bad days. So I took a leap of faith and went to see a local lady who does 'body stress release' and who was familiar with dealing with this (Google body stress release). The key thing I found is that it doesn't work instantly. It took a few sessions before I noticed the benefits. Now I only go once every 8 weeks. This helped deal with stress as well, which we know only too well makes things worse. It's like I've had to re train my body to cope with stress!

I still have the odd bad day. But even then I can still wear my skinny jeans and leggings. Let me know if you need more info.x

8

Hey Well im no tsure if the symptoms are the same but they have been going on now for 10 months. I first was diagnoised with gonhrrhea and was treat successfully as well as Bv symptoms were discharge and itching, I also started the depo shot and i was not intimate for a while but when i did become intimate itching i noticed a pain during intercourse kinda of similar to chaffing, raw sensation and burning. I went to see my dr and was told there was nothing wrong but they did notice a little white indicating a yeast infection so for the past 10 months every dr i have seen has noiced the white but still no cure from starting the depo. i revisted my Dr and retest everything was clear but the pain persisted, I went to another Dr whom was unable to find anythig abd just perscribe yeast infection pills So i went to another Dr who perscribe me a steroid cream as well as estrogen to increase my skin cells due to the depo shot, I was told the cause was my depo shot and i got off of it and to no avail the pain still persist now i am in a relationship and cannot tell him how much sex hurts but i do want tp [please him im so upet it seems like there is no cure and Dr do not seem to understand what im talking about its frusrating because i know something is wrong and i dont want to live like this forever i want to be able to enjoy sex again. Also i have noticed what you call fissure cuts and they are similar to paper cuts in the vagina area theyare paimful and itch my vagina hasnt been the same i just want a diagnosis

9

Hi,just been reading your post sounds a bit like me,waiting to see gyno but a six months waiting list ,so scared I have got something bad down there,my redness and soreness is on my labia majoria ,outside lips sorry tmi ,would be grateful if you could tell me were you were sore,and red ,I'm also ok sleeping it's when anything rubs against it it goes all red etc but raw felling stinging there most of the day

10

Sounds very familiar. Redness varied from day to day. To be honest I think much of it came from various creams and examining. Don't forget the whole area is meant to be a bit red and has a good blood supply. Do you ever get days/half days where it just seems to disappear and you get all excited thinking it has gone, only for it to return with a vengeance? Mine used to do this .

I don't know how much of my threads you get to see but mine was linked to my back where the nerve that runs through my pelvis was being pinched and producing the symptoms. I had some gentle physio for 6 month and now rarely have a bad day. It will get better just persist with the docs and stop using any chemicals down there, avoid fabric conditioner etc.

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Hi,sorry I did not read that bit saying it was caused by your back ,no my back is fine ,just seems to be a problem down there,and worried sick about it,just had a good cry to my self,Feeling sorry for my self and when I saw your post thought that's a bit like me,just want to know what's wrong,I do have health anxiety as well ,relating to cancer so very worried,I maybe get half days had on Sunday didn't feel anything much till late afternoon took I dog for a walk and that took on the pain and redness ,glad you have found out the cause of your problem,it would be so much easier being a man lol xx

12

Hi, just read your post do you get redness as I get on outer lips that's where my problem is and I too just want to wear skinny jeans,waiting to see gyno 6 months waiting times,so worried about it xx

13

That's true, men don't know how easy they have it. To be honest the internet is not always that good at making you feel better. There's so many horror stories and people searching for answers....try not to spend too long on it. Just be patient. This will all resolve itself in time x

14

Did any of the doctors ever mention Lichen Sclerosus or Lichen Planus to you? Your symptoms sound similar to mine and my primary doc didn't know what it was. I went to a gym who is considered an expert in women's diseases and he said I have Lichen Planus. The flare ups are very itchy and painful, red and some swelling. Also patchy areas.

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So im reporting back, i went back to see my specialist she did another yeast culture and found nothing. but IM STILL ITCHY im about to go crazy. She told me she was convinced it was lichen simplex Chronicus and a yeast infection might of triggered the non stop itching (a yeast infection i had a YEAR AGO though!sad

I had mentioned the biopsy but she said ''lets try these ointments first and then we will see''.

Im tired of these dam ointments she even prescribed me anti depressants to take at night.

The ointment is called PROTOPIC OR Tacrolimus. It seemed to help A BIT but lately it just feel uncomfortable not sure if its the side effects (1st week of using it about to go on 2nd week).After looking online i found 2 girls who had the same problem NON STOP itching and used protopic and the itch vanished so i had some hope it would work for me. But now i dont,know im ready to throw the towel if this doesnt work i dont know what to do anymore

wish i could get hit by a train this is so depressing! just want my life back

 

16

Don't use nappy san to soak your knickers - that is when my trouble started

17

Hi there im going through a similar issue im only 19 and its driving me insane, But this all started with a yeast infection about a year ago.

They gave me the pill to take for a day but the itch on the outside never went away (the burning and discharge did though) anyway long story short went back to back with out any solution everything comes back negative for yeast i even had a biopsy done and it came back as ''inflamation'' they also presicribed me anti depressants,ointments which did not work.My next step is going to a dermatologist, hopefully she can help. But anyway after doing my own research ive read about women removing gluten and sugars from their diet that had sucess! their itching dissapeared, Im currently on the diet its my 3rd week now and i can say that the itch hasnt disapeared but it has subsided!, im also taking antifungals along with probiotics so i canrestore the good bacteria in my body, OH and i also read that some women took probiotics and the itch dissapeared!  I beleive its all related to some type of fungus , probably candida overgrowth in the body.

Also you should get some blood tests done as well some women who are missing iron get itchy down there as well , sadly for me that wasnt the case

18

Wondering if its not the atrophy causing my problems in the vulva area..this sounds like me.going to the doctor wed.Going to ask about this.

19

Hi, I am interested if you had any help with the labia majoria reddness, I have tried steroid cream, estrogen , I cannot wear underwear and always feel raw. 

20

This is my exact problem, for two years, have tried creams , everything I feel like life is becoming a extreme struggle