Itchy, raw, vulva, nothing seems to

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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. 

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  • Posted

    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 
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    • Posted

      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 

       

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    • Posted

      Hi Liz,

      I created an account especially for this, because it's like you're describing my situation. Ever since summer, I've had an itchy, red, sore vagina. Just like you, one day is better than the other.

      I've had homone cream, been treated for yeast infections three times, swabs were clear and nothing seems to work. No STD's either.

      I'm starting to get desperate. My gynaecologist said that he couldn't see anything odd except for my hymen being still pretty present. Now I need to 'train' the hymen, but it doesn't explain the rest of my vulva being so painful. I recognise myself so much in your story!

      I was just wondering what your doctor said about having sex. Mine wants me to have it for the hymen but I feel like it's only getting worse sad did you need pelvic floor treatment?

      And so your vulvodynia wasn't that visible, apart from some redness?

      Hug from Holland

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    • Posted

      Hi

      For me the pain and soreness is all outside, so having sex was ok for me. I was just left with a stinging feeling afterwards. To be honest I can't really see how the hymen can have anything to do with this problem. To me it sounds like your doctor can't think of anything else!

      Go and see another doctor. I had to see 7 doctors, including one private doctor who was a specialist in gynaecologist (he was still useless). My problems relate to the nerves in my back, so I had gentle physio on it. Now although sometimes I get soreness when I pull my back a bit, most of the time it is ok. But it took me nearly a year of suffering before I got the problem under control.

      Stay strong

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    • Posted

      Hey!

      Ok, yeah thats how I feel as well, during it's okay, but afterwards I'll get the stinging feeling. But even without having sex, I can get that feeling suddenly. Sometimes, I think it's improving, and then later that day it gets really sore and red. There just doesn't seem to be a clear reason for it. It's exactly as you described, I was so surprised by that.

      Don't know either about the hymen, but I think it's a seperate problem. Will see another doctor after my next appointment! Thank you for your time and consideration towards all the women out here

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    • Posted

      Hi Liz84514.after reading this response to another suffered I'd say that I can totally confirm I've got this Vulvodynia. I too have suffered with an osteoarthritic back since 1996 and an sij (sacroiliac joint) 2012...my problems down below have started I'd say over last 18 month but yes you are right. ..by time I'd eventually get a doctors appointment it would have cleared up in that the raw patches would have healed until they break out elsewhere with swollen and lumpy areas. I've suffered for the last few weeks continually so I think another visit to GP is iminent especially whilst I have a break out if that's how it's described. Hopefully I'll get it under control with for physio on my lower back sij problem so maybe that win help. Thanks you've been very helpful...lit was a eureka moment reading your initial post and now this response. Win let you knuw how I get on Thank you again.

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    • Posted

      I have everything to the T, everything you described  is what I’m going through, I’ve been feeling  alone and depressed but reading this gives me hope, thank you for sharing 
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  • Posted

    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!

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    • Posted

      Hi Kate, I'm hoping at this point in time you found a cure and are feeling better.  Would you please update us on how you are feeling and what, if anything helped you to feel better?

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  • Posted

    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...

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    • Posted

      I used Protopic for 6 months and one month combination with estrogen, after one year with this problem , I finall went to a new gyno. yesterday. I now have 3 different creams to use over the next 6 months before I see him again. Yesterday he had to stretch my vulva skin as it was shrinking too tight and causing even more burning. 
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  • Posted

    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!!!!

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    • Posted

      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

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    • Posted

      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
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    • Posted

      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

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    • Posted

      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. 
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    • Posted

      What helps me is to get a sitz bath basin that fits on the toiilet..can be bought at medical supply store.soak in warm water for about 15 min.Then i air dry..lay on bed..was told to do this once or twice a day...I just recently tryed vitamin e oil,from a regular vit e capsule on vulva,only have done this 2 nights..are you in menopause..check with your doc about the e.
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    • Posted

      Hey I have the same problem as you please tell me if you have found the salution , life is very hard n I can't explain so please help if you can
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    • Posted

      My symptoms and treatment from doctors is very simliar to yours. Have you found anything or found a doctor who has found out whats wrong?

      Thx !

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