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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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  • cath38279
    cath38279 liz84514

    Posted

    Can I ask those of you with vulvodynia to describe it? I've been diagnosed with it (though I'm not totally confident about the diagnosis), but the main thing for me has been itchiness all over - outer labia, hairy bits, inner labia, - not really pain as such. Thanks! x
    • Hippychick44
      Hippychick44 cath38279

      Posted

      For me it varied.  Sometimes sore and painful around the opening to the vagina.  Sometimes a sharp stabbing pain around the clitoris.  Sometimes pain in the whole area like a swarm of bees if that makes any sense lol. Always inside labia though not on the outside. On a good day it would be just uncomfortable (feeling of wanting to pull clothing away from the area all the time).  Everything looked normal.  Hope this helps.
  • m100
    m100 liz84514

    Posted

    Hello-

    I as well have some sort of these symptoms and am wondering if anyone can help. For the last 18 months i've had symptoms that come and go, but for the last 4 months they have been pretty regular. the symptoms include constant awareness of my vulvar region, itching around the bikini line, anal region, upper thighs, perineum, inside the labia, and then random "stinging" sensations as well. I will just be standing or sitting and I'll get this sharp sting. It isnt painful, just really uncomfortable. The pubic hair itself also seems to have a "prickling" feeling to it. I have saw about 6 doctors at different offices and at first they did say it was yeast or BV. So I was treated with OTC monistat or a diflucan. I also even tried inserting yogurt and boric acid to balance the ph levels. My PCP also suggested birth control because maybe its a hormonal imbalace.

    I am 23, and am not on any medications at all. In the last 4 months all the swabs come back normal. No STD's, yeast, BV, trich. I also had bloodwork done just in case for herpes. Even though I have no visible symptoms. I do get terrible backaches, and sometimes it will feel sensitive down there to the touch. The thought of having sex scares me due to the fact i'm worried it will be painful. I am seeing a new specialist at a vulvar clinic in 2 weeks so I am hoping to get some answers. I as well did the unscented soap and detergent, no underwear, no fragrances or perfumes, etc. If anyone has any ideas please let me know. 

    Thank you. 

    • liz84514
      liz84514 m100

      Posted

      Hi sorry to hear you are suffering.my symptoms were very similar and I am now fine - so don't give up. I eventually made the link with my back ache. You've got lots of nerves that run through your pelvis and some of them send messages to the groin. My pubic hair would feel sore, and like you the pain would move round with good days and bad days. In the end I had physio for my back and I now do lots of exercise for my core to keep it strong. A year and a half on I rarely notice the problem. Of course there are lots of other things it could be but it might be worth having someone look at your back x
    • lee12629
      lee12629 m100

      Posted

      Id try a dermatologist also. Another thing to look up is Lichens Sclerosis,also could be hormonal,im in my late fifties and have had all your symptoms,i have vaginal atrophy as i am post menopaus,but i know younger women can get hormone issues to. Not fun I know,I hope you find some answers.
    • m100
      m100 liz84514

      Posted

      Thanks for your response. My only concern with my symptoms is that I see alot of people who talk about having vulvodynia having "Pain". I dont necesarily have pain. Its this uncomfortable stinging itch almost. So i'm just worried I will see this specialist and she will send me away because of it being vaginitis. Something has to give eventually, I hope!
    • jade2896
      jade2896 m100

      Posted

      I have chronic itching as well, 1st advice is make sure it's not an infection (I'm sure you have ruled that out already). I went to a dermatologist after so many GYN visits and no solution. She prescribed me Doxepin it's an anti depressant but works like a antihistamine it makes me so drowsy but it has helped alot with my itching. I would recommend going with a dermatologist
    • HK73037
      HK73037 m100

      Posted

      Hi m100, would you please share you any update on your condition.  I hope to hear some good news.  I'm suffering with the same symptoms.  Did anything help you to get better?

  • tamara60700
    tamara60700 liz84514

    Posted

    Thanks for posting, its helping. But i have a question: I can't understand how amitryptiline would help that at all?It is a pyschotropic drug that causes seizures, wight gain los of cognitive function and suicide is common... and a long list of heart problems and it is very easy to overdose becasue it is such a potent drug. There are a number of class action suits against amitryptiline. Singer Nick Drake overdosed on this drug and committed suicide on it. They know is causes suicide which is why they legally have to say so on the label.

    I wouldnt recommend it or I would stop taking it asap.

     

    • Hippychick44
      Hippychick44 tamara60700

      Posted

      Hi,  all the things you are worried about regarding Amitryptiline are associated with a much higher dose than would be needed for vulvodenya.  I found a definiate improvement after 10 mg a night and upped it to 20 mg after about 6 months.  No mood swings, no weight gain, no anything except relief from my symptoms.  It works because it deadens the nerve endings so you dont feel any pain.  Good luck.
  • lily_53993
    lily_53993 liz84514

    Posted

    I have recently been having an vuvla irritation everytime after I shave. It gets a little red after shaving then goes away, I have a couple little bumps that's been here for a month now. My doctor told me I had razor burn and prescribed me with hydrocortisone ointment it helped take redness and irritation away. I still get friction itchiness sometimes still though. Shaved again two weeks later, not realizing I should have trimmed the hair first cause it was a little long, and I think that's why I have razor burn again. Friction from clothing irritate it the most, I haven't had sex at all lately since I got tested for stds a couple moths ago, does anyone else have these problems?
    • jade2896
      jade2896 lily_53993

      Posted

      If you want this to stop happening, stop doing it. Your not making it any better by shaving and shaving again. Also don't scratch it, scratching makes it 10x worse. You're only damaging the skin more let it heal and apply anti itch lotions and cortizoids for the irritation or even Vaseline
    • lily_53993
      lily_53993 jade2896

      Posted

      Thank you, that's what everyone has been telling me. To stop shaving so much so I'm probably going to wait a couple months to shave again I'm just going to trim it. Thx helped a lot
  • indica15104
    indica15104 liz84514

    Posted

    Hey, I've just read your story and I'm glad that it has all worked out for you. I'm 16, and just recently, like yesterday, I got this unbearably itchy, red, swollen rash. During this time and still now I'm on my period so my mother just assumed it was from the pads combined with the super tight pants I wa wearing but even in baggy clothes I'm suffering. It's the worst itch I've ever felt and it kinda burns. I don't know if it may be vulvodynia or if I will just go away with my period but it's so uncomfortable I can't attend school. Plz help.
    • liz84514
      liz84514 indica15104

      Posted

      Hi

      Don't stress too much. Your mum could be right, sometimes your period can cause discomfort like that, it doesn't mean its going to stay for ever. I would say give it a few days until your period is over. Then if it persists, more than likely it's something as simple as thrush or Bacterial Vaginosis which are easily treatable over the counter.

      Stick with the baggy clothes for a few days and I bet it will clear up.😀

    • jade2896
      jade2896 indica15104

      Posted

      I DOUBT you have vulvadynia,You probably have a yeast infection. I've had that before but it was only on the skin. It was red very itchy and it burned. Antifungal creams should work
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