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Itchy, raw, vulva, nothing seems to

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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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  • lee12629
    lee12629 liz84514

    Posted

    So good to hear. I had,sometimes have similar issues. Mine is from vaginal atrophy. Most of my symptoms were similar to yours on the vulva. I have found out somtimes the best treatment is basic. I was overtreating my symptoms. Now i just use vit e externally and some wayer to rinse,and things have settled. At least for now. I think too many creams etc can make the problem worse. But thats just ne.
  • Mum2girls
    Mum2girls liz84514

    Posted

    Hi Liz . Love the post . I suffered since the birth of my second child . I've had a mild prolapse repaired on my posterior wall and still have a slight anterior prolapse . My urogyn can't figure out why I get symptoms of discomfort. I constantly feel like my perineum area is aggravated by clothes and at times my outer labia and clitoris feels like they are irritated on and off too with or without underwear but worse with underwear . 

    What do you use now instead of amitriptyline ? 

    Im going back to doctors to ask for another trial on it . It eased my symptoms before but I felt awful on it . Not sure I gave myself long enough to get used to it.  Still haven't been diagnosed with vulvodyna but I'm convinced it is.

    i too have back issues which I think contribute to the issue. 

    Have you been told if this condition can go on its own in time ? 

     

    • liz84514
      liz84514 Mum2girls

      Posted

      Hi. I no longer take anything and I've been able to pretty much resolve the problem for myself. I don't think doctors acknowledge the back thing as a cause but I can say with 100% certainty that for me this is the cause. As soon as I get back ache (lower back), usually from sitting badly/driving for a long time, I know that I'll be wearing skirts for a few days!! But mostly I am fine now.

      I've really put some effort into exercises to strength my core. As a result my back is much better and I rarely get irritation down there. This combined with avoiding fabric conditioner on knickers etc has really given ne my life back.

      A word of caution though....its been a long time. I first started suffering three years ago this October. It devastated about 7 month of my life to begin with until I worked out the relationship with my back. So if this is the cause be patient and persistent with looking after your back. All the best x

  • Mum2girls
    Mum2girls liz84514

    Posted

    Hi , thanks for replying . I'm trying to strengthen my core too as my back has a disc tear . I have good and bad days but lately it's driving me mad. 

    Sometimes worse towards a period . 

    Im going to give the amitriptyline another go . At the same time really work on my core and pelvic floor strength in hopes that when I come off it the work I put in has helped x

    • HK73037
      HK73037 Mum2girls

      Posted

      Hi - I have been dealing with this for about 3 months.  Would you please share how you are feeling now?  Have you been able to find any relief with any type of treatment?  Thank you in advance.
  • Mum2girls
    Mum2girls liz84514

    Posted

    So do any of you with vulvodyna feel like your clitoris and urethra area have the prickly feeling ? That comes and goes for me. Also one side of my perineum where my episiotomy was gets aggravated by underwear but nothing visible and no infections x
    • liz84514
      liz84514 Mum2girls

      Posted

      Hi yes that's exactly how vulvodynia feels and it switches between prickling to rawness and sometimes a bit like someone is pulling your pubic hair. The specialist I saw described it as a bit like having a cheese grater in your knickers 😀
  • tammy69145
    tammy69145 liz84514

    Posted

    This sounds exactly like me! I'm really struggling I've been to the Drs a few times they give me creams, nothing works. I'm going to go back and see if I've got what you have. I've spent so much money on loads of differently things. I can't cope with it any longer it's been 5 months! I'm so sore and itchy x

    • nikem2015
      nikem2015 tammy69145

      Posted

      I'm a year in my search for an answer and now hopefully on the right track - I found a pain management consultant who deals with vulvodynia, he explained a majority of the time it's down to nerve damage with effects muscles of the pelvic floor. I am on a med called pregablin which stops your brain from registering the nerve pain so it gives the nerve time to stop going into spasm type pain and hopefully over time the nerves will calm down and go back to normal. It also come from having muscle spasm or tightness/ pain across the pelvic floor so I am also having weekly pysiotherspy to hopefully get my pelvic floor muscles to calm down. It's going to take a while but I think I'm on the right track. I also think for me it might be linked to hormones as I changed my birth control a few months before the pain/soreness started so I stopped the pill in December and hopefully my hormones will balance out and also help. I think the thing is not to give up as it's not in your head and if you haven't I would definitely make an appointment to see a women's health physiotherapist who deals with vulvodynia - do a Google search in your area and you can normally get an appointment the same week xx

    • HK73037
      HK73037 nikem2015

      Posted

      Hi - I have been dealing with this for about 3 months.  Would you please share how you are feeling now?  Have you been able to find any relief with physiotherapy?  If so, would you please explain what exactly they do?  Thank you in advance.

       

  • tammy69145
    tammy69145 liz84514

    Posted

    Thank you, I will. This all started when I started the contraception pill about 3 weeks later it all started. I can off it for a a month it didn't ease so I went back on it. Hopefully I can get it sorted xxx

  • brianna81768
    brianna81768 liz84514

    Posted

    Hey

    I was also wondering the same thing I have been extremely itchy and so I been scratching to where I'm either very red and swollen or I'm bloody I have done everything I can think of from baby powder and corn starch to taking a shower trying to get rid of the sting. I'm clean as in std clean and I wash down there alot. any recommenditions?

  • katie71195
    katie71195 liz84514

    Posted

    Hi Liz, just spotted your post and you sound like you've had exactly the same experience as me. Horrid isn't it? I suffered around 8 years ago. I'd taken the morning after pill and was going through a very stressful time in my late twenties and I woke up one morning with what I thought was a nasty yeast infection. I went to GP but was embarrassed - it was a young male Dr, he gave me antibiotics for a uti (which made it worse) and I suffered terribly for 4 months. Finally saw a consultant who gave me ammityptiline and it also thank God resolved. I thought that was the last of it. I went on to get married, had two little boys (3&1) and then four weeks ago I have had another flair! I can't believe it! I was trying hard not to have a third baby so trying some combined pills and I can't help thinking that hormones could be connected to this condition?? Did you experience this? Have you had another flair? What dose ammityptiline did you take? My GP just gave me some more and I'm hoping it will work again. What a horrid condition so upsetting! Sometimes it's just an itchy irritation but sometimes it's so painful! Lying down helps and definitely no stressing!

    • HK73037
      HK73037 katie71195

      Posted

      Hi - Just curious whether you have been able to get the issue under control?  Also, would you please let me know how this issue was resolved for you 8 years ago, was it with the ammityptiline alone?  How long did you have to take it for and what happened when you came off (I assume you did stop taking it eventually since you said you went on to have children).  Thank you.
  • diana03672
    diana03672 liz84514

    Posted

    Hello Liz84514!

    Please I would like to talk with you , I've been dealing with a problem sounds like yours

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