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Itchy, raw, vulva, nothing seems to

Posted , 79 users are following.

liz84514
liz84514

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. 

4 likes, 231 replies

231 Replies

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  • josie36250
    josie36250 liz84514

    Posted

    Hi everyone!

    I've been to the pelvic floor therapist this week. We discussed a couple of things. Firstly, I needed to get my breathing right. It's very high now, I need to breathe more towards my belly. Second of all, I need to stretch my groins every day. Then we also had a conversation about me falling on my tail bone twice when I was younger. It's not completely straight, with some twist in it too, which could lead to irritation as the pelvic muscles are attached to it. After all of this we'll start with some exercises. Hope this will work, combined with stopping taking the pill. Fingers crossed!

    • HK73037
      HK73037 josie36250

      Posted

      Hi Josie - would you please update us on how you're feeling?  Did pelvic floor physical therapy help you?  Did anything help you to feel all better?  I'm suffering with the same symptoms and would greatly appreciate any advice.  Thank you.

  • cath38279
    cath38279 liz84514

    Posted

    Thanks so much for this. I've had itchiness all over down there for 18 months, and have gone through the usual list of steriod ointments etc. My doctor has just prescribed amitryptitline, but I was wondering what your experience was of sleepiness/weight gain with that drug. I'm a bit put off by the side effects! Thanks ever so much

     

  • lee12629
    lee12629 liz84514

    Posted

    Did you have the cotton swab test for vulvadinia im having that next time. I have had all your symptoms but also have vaginal atrophy which can affect the vulva. Do you use any creams etc for the discomfort?
    • rosielamb
      rosielamb lee12629

      Posted

      Hi Lee, I have just realised that my problems 'down there' are due to some sort of allergy when I take any sort of painkiller, can I ask if you take painkillers at all.  I can't find and info on this on the Internet and am thinking of emailing one of the pharmaceutical companies

      best wishes Rosie

    • lee12629
      lee12629 rosielamb

      Posted

      I do take an anxiety med,but have for years and it never caused a problem. Do you drink enough fluids? Maybe dehydration could have something to do with it?
  • Hippychick44
    Hippychick44 liz84514

    Posted

    Hi ladies (fellow sufferers), I found this page because I to had been suffering for about two years with an itchy, sore, uncomfortable, vulva condtion.  Having tried all the over the counter remedies without any relief (in fact most made it worse) I eventually plucked up the courage to go to the doctors.  I was very embarrassed to discuss this very intimate problem but I was at my wits end with my symptoms affecting my everyday life, work, relationship etc.  Btw I am 55 and post menopausal.  My doctor at first gave me some cream but it didn't really help (I think it was intended for thrush, even though I had no symptoms of thrush).  I didnt want to try hrt or hormone cream due to breast cancer being in the family. Anyway eventually I suggested to my doctor that I try amitryptaline.  I only take a very low dose 10 mg per night. I have to say my pain levels have gone from 9 to 1 or 2 in only a matter of weeks.  I also squeeze evening primrose oil out of a capsule every night and apply it direct to my vulva (on the suggestion of someone else on a forum).  This seems to help a lot aswell (has the advantage of being a lubricant too!).  I dont use bubble bath and I wash my underwear in non-biological liquid.  Don't get me wrong I still have the occasional bad day (I've had maybe 4 or 5 bad days in the last 4 months since taking amitryptaline) but I have had (quite a lot actually) of days with no pain at all. I drink wine, wear tight jeans and have regular sex.  Just to say also that I have had no side effects from such a low dose of amitryptaline - no weight gain or anything like that.  In fact I sleep better since I've been taking it which is an added bonus! I feel like I have my life back. Sorry for the long post but I wanted to share my experience with you all in case it helps any of you.  Good luck xx
    • Hippychick44
      Hippychick44 lee12629

      Posted

      Hi, no I haven't.  My doctor says it vulvodynia although she has never taken any swabs or anything like that.  She has examined me to rule out LS but thats all.  
    • lee12629
      lee12629 Hippychick44

      Posted

      I have vaginal atrophy, mostly vulva irritation. My doc said shed consider a low dose tricyilic anti depressant for that issue also.
    • Hippychick44
      Hippychick44 lee12629

      Posted

      I would give it a try.  I had reservations myself at first, but was at the point that I would try anything to relieve the pain and discomfort.  I hope it works for you too.
  • nikem2015
    nikem2015 liz84514

    Posted

    Thank you - that's really good to hear as I think drugs may be my next step but I've been really hesitant to try them after reading horror stories about them turning you into a zombie ...its refreshing to hear a good outcome xxx
    • Hippychick44
      Hippychick44 nikem2015

      Posted

      Yes give it a go.  Start with a very low dose.  My doc said to increase the dose to 20 mg after two weeks but I didn't feel the need to.  One thing I forgot to mention is that I sprinkle some baking soda into my bath which apparently helps with ph levels.  Not sure if its helping but I will keep doing it while I'm pretty much pain free.
  • lizzie98897
    lizzie98897 liz84514

    Posted

    Hi Ladies, 

    i made an account for this especially, so i can tell my story smile

    've been reading this thread over a year ago when my issues started, similar, sore burny skin, red. And like most of you without any obvious reason - no thrush, no herpes, no other infection. Eventually after so many different docotrs and creams, my consultant told me i have a textbook vagina, it all looks perfectly normal and well basically, in nicer words, she said it is all in my head.

    Thanks for nothing my dear doctor.

    However! i found what cause the problems for me! ShowerGel!!!! i'm not sure yet what exact ingredient, but I suspect the sodium laureth sulfate or similar, and i seem to have developed a sudden allergy to it. Why it took me so long to find it out? Well, when all the pain started, I did actually switch from normal shower gel to "hypoallergenic" stuff, assuming that if it says hypoallergenic on the tin, then there won't be anything in ther that i can react to, right? Wrong. so after about 18 months of stress and upset I swapped to soap, and the problems disappeared within less than a week.

    I wish the doctor would have mentioned this to me. I only started thinking about it when a coworker told me that he has problems with the LSL, and ever since he chenged to an SLS-free toothpaste, he has no mouth ulcers anymore at all. i don't have toothpaste problems, but it made me try it out. 

    i know i have issues with one kind of fabric softener. but other than that i never, at no point ever, had any allergy issues, skin issues, eczema or else. the only thing i am allergic to is nickel. So this shower gel thing came up out of the blue. I have no idea what set it off, if anything.

    Please ladies, give it a go, use pure soap, no additives, no perfume. homemade is what i use. It might work for you as well, and is an easier solution than medication.

    Good luck to all sufferers, i hope i could help at least a little.

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