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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

    I'm so sorry for you all, even though it's good to know that I'm not alone. Does anyone know if there could be improvement by training the pelvic floor? After hearing about the relationship between those, some things became clearer. I've had quite a lot of pain around my tail bone and groin for a couple of years now. Not always, just sometimes with certain movements. Could be related too.

    I'm only 19 years old and this is really keeping me back from having a normal student life. I'm even scared of dating, and I'm a very outgoing person... Hugs!

    • nikem2015
      nikem2015 josie36250

      Posted

      Hiya, yes definitely I think it could..The chiropractor seems to think it's all connected when I spoke to her over the phone. She asked if I had a bad fall or accident when I was younger and if I had damaged pelvic floor muscles in labour. At the moment I feel like I'm getting a constant tightening in my lower abdomen that goes round my back and if I'm in bed I have difficulty laying on my side as my legs start to ache - she thinks it's all connected, there must be some kind of link if we all have the back pain as a symptom...I'm keep everything crossed! Well apart from my legs as that hurts ha! Xxx
    • josie36250
      josie36250 nikem2015

      Posted

      Thank you so much for your answer! My legs hurt as well while laying on my side, and especially the groin is pretty tight. Thought my muscles were just stiff but this definitely makes sense. No back pain for me though. Haha no don't cross your legs! Will lie in bed in another position too wink

      I hope you'll get rid of this stuff soon! I'll keep you all updated xxx

  • charles34814
    charles34814 liz84514

    Posted

    i recently had a baby 6 months ago and am breastfeeding.  during the past couple months my vulva has been on and off again itchy.  i have gone to my doctor numerious times and they have done a couple tests for yeast and stds all of which coming back neg.  they have put me on a couple diff creams that have worked a little but the itching comes back.  my dr now wants to do a biopsy and im scared.  do they only biopsy if they think it could be cancer or just to rule out cancer?  i have no other sypmtoms of vulva cancer besides the itchy.  could it be from breastfeeding and low hormones?  anyone else have this issue or any advice?  thanks
    • lee12629
      lee12629 charles34814

      Posted

      They do biopsies to rule out skin conditions also.It probably is from the change in hormones.
  • josie36250
    josie36250 liz84514

    Posted

    I've shared my thoughts with the gynaecologist and he said to me that he thinks there might be a possibility I've got vulvodynia too, but he first wanted me to try to stop taking birth control. So now I'm off the pill, need to wait for two months and see what happens. It feels good, but I also went back to my GP to get a referral for pelvic floor therapy. Fingers crossed that it works this way...
    • nikem2015
      nikem2015 josie36250

      Posted

      Ah hope it works for you...strangely my consultant put me on the pill to help, it didn't so I stopped taking it this week as it makes me really nauseous - I've heard stopping birth control can help so I was surprised he told me to try it. If your doc says there's a long waiting list to be referred to psyiotherapist then try and see if there's one in your area who deals with pelvic floor & vulvodynia - it will cost you put might be worth it in the end xxx
    • josie36250
      josie36250 nikem2015

      Posted

      Thank you for your reply <3 oh thats weird! yes exactly, it's the variety of the amount of hormones that has to come back, instead of oh="" thats="" weird!="" yes="" exactly,="" it's="" the="" variety="" of="" the="" amount="" of="" hormones="" that="" has="" to="" come="" back,="" instead="" of="">
    • josie36250
      josie36250 nikem2015

      Posted

      Oops that went wrong! Instead of a constant dose every day. I've got an appointment at the pelvic floor therapist on Tuesday already, so that's good. Thank you so much xxx
    • nikem2015
      nikem2015 josie36250

      Posted

      Ah great! Good luck! Keep us posted on how it goes...its definately the right route for me I'm sure of it xx
    • josie36250
      josie36250 nikem2015

      Posted

      I will! Awh I'm so happy to hear that smile Best of luck for you too xxx
  • Guest
    Guest liz84514

    Posted

    Thank you! Happy to find this and others are experiencing similar symptoms! I began suffering with this a few months ago after using the wrong soap down there. All my labs come back as normal. Too much money in medical Drs. I don't like using prescriptions anyways unless necessary. Homeopathic seems to work better with my body. My mother has been suffering with this for years!! She has had numerous tests! I can't wait to tell her.

    I have cut out coffee on and off also and I think that helps me. I do receive reiki I am going to check into the stress release therapy. It is so true that it gets better and I think I'm good and then BAM it's back so terribly. My husband gets so discouraged and at times has accused me of just making it up to not have sex sad so sad! I cleared it up with him he understands but still frustrating for both of us!

    I am cutting out all fabric softeners also no soap down there just water. I did have an injury to my lower back almost 20 years ago! It comes back if I don't keep my core strong! So true that these could be related! I only use organic cold pressed sesame oil down there as needed. I try not to even rinse it to much with water down there. Try to keep my "lips sealed" while showering! I still use soap on my bottom tho.

    Thank you thank you thank you!!!!

    • liz84514
      liz84514 Guest

      Posted

      Hiya, just a quick message to wish you well with this. I'd really recommend having someone look at your back. Even an old injury can stay with you. I initially hurt my back about 25 years ago and then kept 'putting it out' on an off over the years. The principal with body stress release is to slowly and gently loosen up the muscles which have become tight over time as you adjust yourself. It takes time though and will need at least a few sessions before you notice a difference. Best wishes with it all and don't give up!
    • Guest
      Guest liz84514

      Posted

      I have checked into the body stress release and it looks like something that would help but the closest practitioner to me is 12 hrs away. Thank you for all the information you have shared and thank you for your understanding and support! I read on another posting here that someone tried an oxalate diet that helped her. I'm going to check into that also. I wish a practitioner would move close to me!
    • Guest
      Guest liz84514

      Posted

      Also, I use a few drops of tea tree oil mixed with some organic cold pressed sesame oil down there. The tea tree oil does give a little burning/cooling sensation but as crazy as it sounds it helps relieve the pain considering that whole area burns like a mother anyways!
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