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Burning sore sensation inside vagina / Some say vulvodynia / Going mad please help!

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  • Burning sore sensation inside vagina / Some say vulvodynia / Going mad please help!

    Hey everyone, this is going to be quite an essay so please bear with!

    I first started having what can best be described as a burning feeling just inside my vaginal opening and the vestibule at 17, back in 2009. I don't remember any obvious trigger but in that year:
    • I went on the Pill (yasmin i think?) I hadn't had sex yet but requested to try it due to my bad spots and acne I had at the time and very painful periods

      First had a thrush infection

      First had a UTI

    All of those things happened in the space of a few months but because it was quite some time ago now it's hard to remember exactly when it started. When I was treated for the thrush and urine infections, any irritation cleared up. WHen this burning pain started, i remember thinking that it was thrush again. I got an oral tablet, a vaginal pessary and canesten cream but none did the trick this time. I went to my GP and the swab she did for thrush was negative.

    It couldn't be any thing sex-related because at the time I hadn't done anything sexual. I just got on with life hoping it would go away by itself. I came off the Pill to see if that would help. I didn't go on birth control again until a few months later I had my first sexual relationship. Sex with this burning feeling wasn't extremely pleasant but i had never known any different, and it wasn't always unbearable. This time i was on the contraceptive injection which stopped my periods ( i didnt mind this! )

    Now 3 years later, I have been with a different boyfriend for a year now.

    I hardly went back to the docs because i did get the feeling they thought i was crazy and wasting their time!

    But now i feel that enough is enough.

    My G.P. finally has decided she thinks it is vulvodynia, which is a word I had never even heard of and many people haven't. My mum and girlfriends have never heard of it either!

    However, the gynaecologist that I was referred to is not really sure that is is vulvodynia because the cotton bud test that they do didn't cause me excruciating pain. My pain isn't really provoked, it's just always there. Some women have a similar condition but is pain upon being touched.

    (If you aren't familiar with vulvodynia, it is a chronic burning feeling in or/and around the vulva and vagina with no infection or obvious cause present. It can be constant or triggered) One gyneacologist wasn't 100% sure that's what it was but my GP thinks it is. I think it is because it describes all my symptoms. Something must have disrupted my vagina because I was perfectly fine before. I didn't change my diet or start doing anything differently and any infections I had were treated and any irritation or pain had been cleared up which is why it is so strange. Now having a pain-free vagina that I used to take for granted seems a luxury!

    I am now 21 and have finally sought help after suffering in silence. I had got tested for every STD under the sun several times, had blood tests etc. Everything was fine. When the sexual health nurses and my G.P examined me they always thought everything looked normal and health except one time they said it looked a little red and 'angry' lol.
    My G.P referred me to a gynecologist 4 months ago and she was also confused! I was prescribed Gabapentin but it did little or nothing to alleviate the pain. I took it for about 6 weeks but had to stop as it was giving me severe headaches and slightly blurred vision (it is a major drug used to treat epilepsy! ) I had been told that it was brilliant for some and didn't work so well for others. Am now awaiting my follow up appointment to see what other options I can try. I am waiting for my second gyno appt. Some days it is unbearable and other times it is just uncomfortable. It is rarely painless but being distracted helps.
    Also, sex is sometimes bearable and other times out of the question. I have been with my boyfriend for nearly 2 years and he is very understanding. I fortunately do not have any other health conditions and am appreciative of the fact I am in good health when others suffer from way worse and more serious, life threatening conditions. I am finding it very debilitating and it is worrying that doctors seem to know little about it. It is just so confusing to sometimes be in such pain and not know the cause. I have tried many creams to no avail. Some days I just want to scream and cut the whole area off! Sometimes I feel quite depressed. Just wondered if anyone else has had a similar experience of vulvodynia or vaginal pain/irritation? Or any treatments you have tried that alleviated the soreness, even just a little.

    Things I do/have tried: - Cotton undies only, none at night - No tampons - No condoms - No shower products only aqueous cream - Canesten,Vagisil - Lidocaine - rePhresh - e45 - cetraben cream - sylk gel - baking soda bath (I read it somewhere?!) - I have even tried inserting yoghurt and garlic cloves (crazy or what?!..it didn't help..) I am quite desperate! Feel free to post any ideas or questions. I am happy to give anything a go!

  • I have the EXACT same problem!

    Hello, I have just read this and Omg. I have the EXACT same problem!!!! Not one thing you said I don't feel the same.
    I am 18 and have had this for 6 months, not as long as you but I can completely sympathise. I was constantly back andd forth to my GP yand all they treated me for was thrush, even though every test for that came back negative?! I even went to the GUM clinic and had several tests and swobs - nothing. I was fine?!
    But then a few months later I got what I thought was a water Infetion. Instead my GP said it was an over active bladder! Do you have the same problem? I still feel I need to go all the time and Its horrible having to worry about that as well as my other problem
    I went to see a Gyn yesterday and she basically pared me off by saying that I first had an infection but because I've attacked it with so many treatments, Ive now irritated it?! It is SO frustrating when you KNOW there Is something wrong but people par you off. It's seriously getting me down to thepoint where I am depressed and I even look at other girls, getting jealous because I bet they haven't got a problem down there.

    Like you, I think it could be vulvodynia. All of the symptoms match mine. However I don't know If mine is provoked and It Is mainly just uncomfortable and stingy. I can't even have sex with my boyfriend anymore because its too painful. Seriously don't know what to do anymore, its destroying my quality of life.
    If you don't mind me asking, did the gyn do that swob test on you the first appointment you had? Because mine just looked at it and poked around, dont think she did the swob test to see what areas hurt.

    I completely understand what you're going through and If Im honest Im kind of glad that Im not the only one!!! It's so horrible to live with. Just want my old life back


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