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    » 7 months since the diagnosis
    I'm new to this forum and would love some advice! :) EmptyWed Aug 14, 2019 2:38 am by agtoronto

    » Gabapentin Gel. or other topical creams
    I'm new to this forum and would love some advice! :) EmptySat Jun 15, 2019 5:22 pm by mary jane

    » IMPORTANT FOR UK SUFFERERS
    I'm new to this forum and would love some advice! :) EmptySat Jun 15, 2019 5:21 pm by mary jane

    » Help New Diagnosis
    I'm new to this forum and would love some advice! :) EmptySat Jun 15, 2019 5:07 pm by mary jane

    » 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
    I'm new to this forum and would love some advice! :) EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

    » Vestibulectomy next week in London!! - questions!!
    I'm new to this forum and would love some advice! :) EmptyWed Apr 24, 2019 8:32 pm by HedvigB

    » Dating with Vulvodynia and Vaginismus advice
    I'm new to this forum and would love some advice! :) EmptyFri Apr 19, 2019 10:25 pm by Tartufo

    » Research Participants Needed!
    I'm new to this forum and would love some advice! :) EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

    » Does anyone else have Endometriosis?
    I'm new to this forum and would love some advice! :) EmptyMon Apr 08, 2019 7:54 am by Jo44

    Gabapentin Gel. or other topical creams

    Thu May 10, 2018 9:43 am by Rosie21

    Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

    Comments: 2

    Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

    Sat Aug 01, 2015 4:17 pm by Fielder

    Hi everyone,

    I'm a newbie.  I live in the UK.  

    I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

    I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

    Comments: 11

    An absolute success story- please read!

    Fri Mar 08, 2019 10:57 pm by Persevere1990

    Dear All,

    I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

    I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

    Comments: 0

    I'm sorry im rambling

    Thu Feb 21, 2019 5:49 am by Jet227

    hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

    Comments: 1

    New member need advice please

    Thu Feb 28, 2019 11:33 pm by PANDORA123

    Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

    Thanks

    Comments: 5

    MonaLisa Touch

    Fri Feb 08, 2019 7:35 pm by rl2091

    Hi All,

    I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

    Comments: 3

    Diagnosed Recently

    Tue Jan 08, 2019 3:55 pm by flissyg

    Hi All,

    I’m so glad I’ve found a place where there are others who understand how I feel!

    So this is my story:-

    I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

    Comments: 4

    New and need advice and help

    Wed Dec 05, 2018 3:26 pm by Cin124

    Hi everyone,

    About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

    Comments: 6

    New here would very much appreciate advice at the end of my rope

    Wed Jan 09, 2019 9:09 pm by Jma990o

    This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
    So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

    Comments: 3


    I'm new to this forum and would love some advice! :)

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    Post  anikita on Tue Jun 05, 2018 4:13 am

    Hi lovely gals!

    I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

    I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend and it hurt. At the time, I associated it with it hurting as a result of having sex for the first time. But now that I think back, I always felt some burning when trying to use a tampon or anything of that nature - but up until last September, my previous gynecologist linked my on-and-off burning to either BV or Yeast so it was a cycle of being on treatments, to just managing to the pain. It got to the point where it would burn like crazy at the entrance, and then I'd get into it and just not feel any pain until afterwards.

    This past December, I started seeing a new gynocologist who diagnosed me with Ureaplasma and treated me for it. The burning in the same spot remained. I got off Lo Loestrin for a few months and started Kariva back in February. Refrained from anything non-organic and started washing all of my undergarments and clothes in sensitive detergent. I also refrained from having sex during that time.

    I'm not sure if it is worth mentioning but the areas around the vestibule, are red and those spots are the ONLY spots that burn to the touch. Sometimes it feels like I'm so severely dry when I check down there and that causes MORE burning around my urethra too - but still concentrated in those places.

    In March, my boyfriend and I tried having sex again (with condoms). And the burning was MINIMAL but just for the first few seconds and then would just fade into the oblivion - this made me ecstatic. The burning was still there but not to the extent that it had been, I could tolerate it. This went on for about a month and then stupidly, after I got my period, I didn't use organic pads. Boom, the burning came back as bad as it had been, this time around though, I knew I was making it worse with the fear I was developing about sex hurting.

    As of now, my doctor once again has cleared me of any infections and has told me to take baking soda sitz baths nightly if possible, and apply coconut oil to the area - not sure if she hopes this constant manual application of it will desensitize it? I haven't been THAT good on doing the things and I'm just feeling at a loss.

    I know so many of you have it so much worse and my heart truly goes out for you. I am scared that it will get worse. I am scared it will not go away. I know that it's not connected to muscle tension because the red spots are the ONLY spots that hurt and they have been there for over a year now - just red sore looking skin. That's where my pain stems from. I fear that I'm psychologically connecting pain with sex and I don't want that. Sometime it burns at first but in a way that is tolerable, other times, it just completely burns and I get so turned off during the act that it burns more because I am so in my head that I just break down.

    I don't know what to do, I want to enjoy the physical aspects of being a woman and not having a diagnosis isn't helping too much. I'm doing the baking soda baths but what else can I do? I don't want to turn to actual prescription drugs but I want answers, hope, advice, guidance?

    anikita

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    Post  emalita on Fri Jun 08, 2018 3:42 pm

    I'm so sorry to hear that you're in pain, and I know how horrible it is to associate something so intimate as sex with fear.

    So I've gone through a lot of things to get to the point I'm at now (can have sex regularly with minimal discomfort), and you can read through some of my story at the link in my signature. It unfortunately has been years of trial and error and listening to my body's very subtle clues, but I'm at a much better place today than I was when this all started for me.

    Do you ONLY have pain with contact (touching, tampons, penetrative sex, etc)?

    Below are some things that helped me:

    - A Chinese Medicine Dermatologist suggested I use unrefined hempseed oil on my vulva over coconut oil because coconut oil can clog pores and people tend to have poor reactions to it. She suggested I soak in a warm bath (can add epsom salt if you want) and apply the oil right afterwards before my skin dried to lock in the moisture (oil itself is not a moisturizer, it just locks moisture in).

    - Even though the YES brand of waterbased lubricants burns a bit during initial application, I found it was and is the only thing that helps when I feel dry or a little raw after sex. It dramatically improved my vulva pain.

    - Use caution with baking soda baths since they can negatively change your vaginal pH.


    I wish I could give you a quick fix that would guarantee relief, but I hope some of these may help.

    Let us know how you're doing Smile

    emalita

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    Post  srbry on Mon Jun 25, 2018 7:22 am


    Hi darling, i'm so sorry to hear what you've been going through. I'm on my 8th year myself and only got diagnosed 2 months ago. You said the burning pain was only around the vestibule. I'm sure you've done all the googling you can but have you come across vestibulodynia? Used to be called vulval vestibulitis. I'm absolutely not a dr but i find even gynos dont know much, a lot of the time, unfortunately. I have vestibulodynia and some of your symptoms sound similar so i thought i'd ask? Also where are you based? UK? US?


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    Post  Snowwhite 03 on Mon Jun 25, 2018 12:46 pm

    Hi .. sorry to hear this .. are you on birth control pills ?.. I had the same issue and unless you get off the birth control pill it will never get better . It messes up the hormones and dries it up there .. try vmagic available on Amazon .. it helps .. please try to reconnect the dots and try to see if birth control pills could be causing it .

    Snowwhite 03

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    Post  davesjen on Mon Jun 25, 2018 11:08 pm

    My heart goes out to you! Please get to Target as fast as you can and get some Vagicaine - it won’t solve you’re underlying problem, but, at least you can numb the areas that are bothering you while you try to solve this mystery...it’s the only thing that has kept me from throwing in the towel - it’s a life saver, literally!! It’s as cheap as can be - $3 - $4....blessings!

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    Post  sarisbaris on Sun Jul 01, 2018 4:33 pm

    I'm so sorry you're in pain! I had V for 15 years and it was the worst. I've been healed for 2. I followed the protocol by Anthony William. Here's my blog. I would also suggest you also join the Facebook group Vulva Warriors. Most of the women on there are following this protocol to heal their V. A handful of us who have already been healed are on there as well answering questions.

    http://myvulvodyniacure.blogspot.com/2018/05/basics.html

    sarisbaris

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    Post  angelique2016 on Mon Jul 30, 2018 7:49 am

    I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) used sparingly every night only before going to bed, and not to wash to much off in the shower in the morning. I did this for about 3 months, took the Nortriptyline at night before bed and used the ointment at night before bed. This worked, why, because the Nortriptyline, is for pain, and makes the brain stop thinking about the pain, as it has now become persistent pain, and the ointment, soothes the skin and it has properties in it to help heal the skin. Anyway I stopped posting on here as I was getting abused by people that were not able to get a hold of the medications in other parts of the world. So if anyone is interested in this information, and if you can get these medications, then it will cure you, you will need to do your pelvic floor exercises after you are cured to help strengthen the muscles again, but I hope that this information can help some people out there, as I know how extremely excruciating this problem is, it bought me to tears, and no sleep and could hardly sit, wanted to go to the hospital so many times, I nearly went crazy with the pain, and of course no intercourse what so ever, could barely even wee without pain, had to wear loose clothes, not tight jeans what so ever.

    So I wish everyone all the best, please don't write back nasty things to me, simply because the medication might not be available in your country, perhaps look for a medication that is of a similar nature that will help you. All the best everyone!  Smile

    Advantan Fatty Ointment is, in fact, a type of prednisolone, (Look it up) so if you can't get it via prescription, then have a compounding pharmacist make it up for you in with an ointment base, rather than a cream, the ointment stays on the skin and protects it from the urine, which burns the skin even more.

    angelique2016

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    Post  Cin124 on Sat Dec 08, 2018 1:34 am

    Hi angelique2016,

    Can I ask what your symptoms were? My vulva looks swollen and feels painful in some areas. I have really raw, painful and inflamed area on the top of my inner labia on both sides near my urethral opening. It looks like the top layer of the skin in that area has been damaged, and it's so painful to touch. Lately, when I walk, the raw area would often get rubbed, which hurts, and I've had to walk so slowly to minimise pain. Urine stings the raw area, so I usually lean forward when I pee to help avoid the pain or at least minimise the pain. I can't sit properly either. I've also been worried about having sex with my boyfriend in the last two months because I'm worried it might hurt or irritate my vulva more.

    I wonder if Advantan Fatty Ointment would help me. I remember about two and a half years ago, I had eczema on my hands, and I was prescribed Advantan Fatty Ointment by my gp. The ointment cleared the eczema off my hands, and it hasn't been back since then. And now I'm wondering if I've developed eczema on my vulva. If that's the case, then I really hope Advantan Fatty Ointment can help me again and heal my vulva the way it healed my hands. Is it safe to use on any parts of the vulva? Also, what's the name of your dermatologist?

    I hope I get a reply soon. Thanks!


    Last edited by Cin124 on Mon Dec 10, 2018 3:36 am; edited 2 times in total

    Cin124

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    Post  angelique2016 on Sat Dec 08, 2018 2:02 am

    Hi Cin124, I didnt have any problems putting the Advantan ointment on at all, it didnt sting or hurt, you just need to use sparingly, it will calm the skin down and protect it, and help heal it, but it is not over night. See how you go, the dermatologist recommended it. I probably would recommend sex, as I did and it caused micro tears, as the skin is too tend, it needs to heal, get the ointment, it will work, if you are in pain, take the Allergon, small dose each night at bedtime this will help the brain stop thinking of the pain, in the 3 months you should be a lot better, pelvic floor exercises for
    strengthening thereafter, it worked for me. Regards Angie

    Dr Josephine Yeatman
    Dermatologist in Greensborough, Victoria
    Address: 154 Grimshaw St, Greensborough VIC 3088

    angelique2016

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    Post  Cin124 on Sun Dec 09, 2018 6:07 pm

    Hi angelique2016,

    Thanks so much for your advice. Do I need prescription for Allergon? The pain is really getting me down, and I want something to relieve my pain. My gp recommended that I try lidocaine gel, but I'm worried that it might sting the raw area of my vulva when I apply the gel.

    Thanks again for your help!

    Cin124

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    Post  angelique2016 on Sun Dec 09, 2018 11:40 pm

    Yeah you will need a script for Allergon. Its the 10mg and only take at night, maybe start with half a tablet and see how you go then go up to 10mg, I dont know about the patches I have not used them, it might make things worse, just use the Advantan ointment it wont sting or hurt the skin.

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    Post  Cin124 on Mon Dec 10, 2018 3:12 am

    Hi Angelique2016,

    I told my gp that I wanted to try the Advantan ointment since I need a script for that, but he said I should wait until my gynaecologist appointment and see what the gyno say. I'm hoping the gyno would prescribe me the Advantan ointment. I wish I could see your dermatologist but I live in Sydney, not Melbourne.

    Thanks again for your help!

    Cin124

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    Post  angelique2016 on Mon Dec 10, 2018 3:53 am

    Thats ridiculous, I just go to to local GP and get a script, just tell them it is for your skin condition, 24 hour clinic will give it, and use a cotton tip, very small amount on it, apply sparingly to affected area and I mean very sparingly, only once a day at night when go to bed, to prevent friction, and then in morning dont wash off in shower, just a little water there, thats it, let the ointment heal the skin, and get rid of the inflammation, take the allergon for pain, simple 3 months you will be a lot better. Yeah pity about being in Sydney, but another dermo could consult with her and see how you go. Regards Karen.

    angelique2016

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    Post  Cin124 on Tue Dec 11, 2018 3:06 am

    Hi angelique2016,

    Thanks for your reply. I really want to try taking the Allergon for pain. But when I went to my gp last week and asked if he could prescribe me something to relieve my pain, he said he wouldn't recommend taking oral painkiller, and he just recommended me to try lidocaine gel. Maybe I'll go to another gp and ask if they could prescribe me the Allergon, but I'm worried they'll want to do all the tests again that I've been tested for.

    Thanks again for your advice!

    Cin124

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