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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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  • kidpenny5269286
    kidpenny5269286 liz84514

    Posted

    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
    • bee80375
      bee80375 kidpenny5269286

      Posted

      Hi ,

      ?I wonder how are you doing now? I am going through the same thing, and still going to different gynaes.

  • vanessa13789
    vanessa13789 liz84514

    Posted

    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
    • liz84514
      liz84514 vanessa13789

      Posted

      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.

    • vanessa13789
      vanessa13789 liz84514

      Posted

      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
    • liz84514
      liz84514 vanessa13789

      Posted

      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
    • lisa46353
      lisa46353 vanessa13789

      Posted

      This is my exact problem, for two years, have tried creams , everything I feel like life is becoming a extreme struggle 
  • joyfulone3
    joyfulone3 liz84514

    Posted

    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.
  • jade2896
    jade2896 liz84514

    Posted

    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

     

  • lee12629
    lee12629 liz84514

    Posted

    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.
  • joyfulone3
    joyfulone3 liz84514

    Posted

    It's difficult to know exactly what your condition is when the symptoms are similar. The symptoms of lichen sclerosus, lichen planus, vulvodynia, even menopause and other conditions too involve vulvar pain, itching, cracking skin, swelling, discharge etc. My general practioner couldn't diagnose me. I went to a gynecologist who called my condition lichen planus. I went to see a dermatologist because I was having symptoms in other areas such as my scalp. The dermatologist says I have lichen sclerosus. My symptoms were very severe last Spring. The symptoms started last fall as mild symptoms of some odd tingling. Then progressed to a bit of discharge but nothing notable. in early February I thought I had developed a yeast infection but over the counter treatments did nothing to help. The the symptoms became unbearable with intense itching, pain and a rediculous amount of discharge which when tested came back as no infection, no organisms, just normal vaginal flora. It took until the end of March to get a diagnosis but my doctors don't agree. What I have determined is that my condition is most likely to be an autoimmune condition and I have been treating it as such. The symptoms started after I had received several vaccines required for employment last November. I believe the vaccines triggered my immune system. A change in diet has been helpful but that is actually the most difficult part. Using steroid creams is something I don't like but use when I experience flare ups. The diet change is the hardest because I feel chained to my kitchen and have to be careful of all that I eat. Then there are other symptoms which seem to be connected such as fatigue and depression. I am fortunate to have a very understanding husband because all of this affects him too. At times I just feel overwhelmed. 
    • Guest
      Guest joyfulone3

      Posted

      So what is the autoimmune issue? I've been having the burning and tingle for over a month. Nothing STD wise but man you could have fooled me. It's awful. Outside my vagina and up and my butt. Help? ??

    • Nancy53
      Nancy53 Guest

      Posted

      I have the same thing. I was wondering if you were ever diagnosed. I was biopsied for lichen schlerosis, but it was negative.
    • stephanie90224
      stephanie90224 Nancy53

      Posted

      Hi Nancy. Right what Im about to say is not what you want to hear and is just my own personal experiance and conclusion.

      There are dozens of things that can go wrong with your lady bits and a lot of it doesnt even have a name. The names given like vulvodynia just means pain in the vulva.

      Therefore there is no particular way to treat a lot of the problems that can arise. Ive accepted that whatever Ive got hasnt got a proper name, no one is entirely sure what caused it. But I do not for one second accept that I have to put up with this pain.

      The medication Im on is amatryptiline 10mg dose. Im 7 weeks into it and it is helping a lot. The awful burning raw feeling I had constantly has gone. I just feel tender and a bit uncomfortable and generally not quite right. I want a slightly higher dose of the amitryptiline - 15 mg and I reckon for me that will do it.

      I appreciate these tablets may not be a long term solution but I very much live in the present and will worry about all that stuff if and when it comes.

    • linda44059
      linda44059 stephanie90224

      Posted

      Hi Stephanie just read this.  I think I might have vulvodynia but my itching is in the opening of the vagina.  Did you have that as well.
    • stephanie90224
      stephanie90224 linda44059

      Posted

      Hi Linda

      I did have a bit of an itch but mainly the burning raw feeling instead. You could have pruitas of the vagina. My first piece of advice for you is to switch from soap to aquious cream instead. My symptoms were all external but other women can have interal ones too. Try your hardest not to scratch the area and instead do a quick tapping motion over the itchy area

    • Nancy53
      Nancy53 stephanie90224

      Posted

      I was wondering if you have something that looks like a red rash in the opening of your vagina? My pain is in the rectum as well. I've been given steroid cream, esttofen cream and kenalog shots but none of it helped .My psychiatrist gave me nortyptoline at my request as none of the 5 gynecologists thought I had vulvodynia. They can't seem to diagnose me so I'm going to try the nortyptoline. I figure it can't hurt to try.

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