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» Can you guys tell me your experiences with diflucan/Fluconazole?
Today at 1:29 am by ryn207

» So frustrating!!
Today at 1:25 am by ryn207

» Looking for suggestions or encouragement
Today at 1:19 am by ryn207

» Looking for a friend..... and new problems
Yesterday at 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad

Comments: 5

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules


I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1

Confused and Looking for Answers!!

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Confused and Looking for Answers!!

Post  Kate1981 on Tue Sep 11, 2012 4:34 pm

Hi everyone

I was diagnosed with vulvadynia (vestibulodynia) 6 weeks ago and im finding it all very difficult to deal with and understand. When I first had sex I was very tight and it hurt which I imagine it does for everyone. As time went on I had normal painfree sex with the same partner for the next 5 years. During my second relationship of 10 years I noticed I got occasional burning during sex and an uncomfortable feeling for the rest of the day but by the next day I was fine. Sometimes it hurt upon initial penetration but then I was ok. Ive never been able to use tampons so I assumed I was just small.

I started seeing a new partner a year ago and this is when the intense pain and burning started. The first time we had sex after 3 days i had an intense burning sensation to the right hand side of my vulva and into my vagina. Initially I thought STD and went to the sexual health clinic all tests came back clear said it was a uti and gave me antibiotics and within 9 days the burning disappeared. For the next 6 months I was fine had amazing pain free sex. I then had a routine smear test which caused pain in my urethea causing another uti so was back on antibiotics. This cleared and I was fine once again. 1 month later we were away on holiday and had lots of sex. The last day of the holiday the burning started once again and it was also hurting to urinate so thought it was another uti infection and was given another lot of antibiotics.

I was then fine again up until 6 weeks ago when the burning started again and this time it hasnt stopped. It has been so intense and I also have a stabbing type pain up into my vagina with a kind of throbbing sensation. I havnt been able to work or leave the house. I went back to the sexual health clinic and was tested once more this time they tested for herpes as well through blood all tests came back clear. I have no marks or anything to see just maybe a slight redness just inside. The doctor at the sexual health clinic said straight away it was vestibulodynia. He performed the qtip test and I jumped every time he touched the area just inside the vagina.

I have read and read about this condition and I am totally devastated at the thought I may have this forever. I have been put on amitripline initially on 10mg but now taking 30mg a day. The pain has massively improved however the burning still remains but not so intense. I am so confused do symtoms come and go? Was the slight burning and uncomfortable feeling I sometimes had with sex be a sign that ive always had it? Im so confused!!!! Sex doesnt usually cause me a lot of pain or discomfort its just these 3 occasions its caused this intense burning and pain a few days later. Is this usual for v? The doctor who diagnosed me also said my vagina was very small so could this be the reason for the burning? At the moment sex isnt even a possibility but I am scared that I will never be able to do it again because of what it may cause afterwards.

I have ordered some dilators to see if that helps. Ive also been referred to a vulval specialist clinic where hopefully they may give me some physio. I also suffer with IBS mainly constipation and im wonderring if this is related. I also have a lower back pain and restless legs but only in my right side the same as my vulval pain.

Any help or advice would be massively appreciated as im going out of my mind.

Wishing all of you suffers some painfree days and positive treatments


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Re: Confused and Looking for Answers!!

Post  scrumptuous on Wed Sep 12, 2012 7:27 pm

Dear Kate,

I have only just joined the vulvodynia support group, this evening, after coming across the site. I am 55 years young and have lived with vulvodynia for 21 years. Can I immediately reassure you, that yes you will be able to accept living with this condition and manage to continue with your life. Following a gynae operation 21 years ago, I developed severe pain and burning. As mentioned by previous members, I was constantly told there was nothing wrong, but I knew that there was. I like you attended the GUM clinic (I have been with my husband since I was 15) thinking it may be herpes, as you try to search for any answer. All my swabs and tests always came back negative. Years ago, very little was mentioned about this condition and I spent the next ten years having injections into the area (anti-inflammatory, which were very painful) and many operations removing skin from the vulval area. I actually had a right sided vulval skin graft at St. Mary's Manchester, because this was the only treatment offered to me. It was'nt until many years later, that a Consultant at Hope hospital actually told me that cutting away the area only temporarily relieves the condition (after weeks of recovery from the surgery), as the nerve endings re-grow and so the condition returns. It would appear to target certain types of women. I was also diagnosed with fibromyalgia, IBS, litchen planus, thyroid antiboidies and am definately a person that worries. When my stress levels rise, I definately suffer most. This aside, I have been married for 36 years to a very understanding husband. As like many of the other women have mentioned, it can have a massive impact on your status, as a woman and your sex life, but if you cannot cope with full intercourse, then there are many other ways to be intimate and still feel close and loving. I myself still needed to fully make love and would consentrate on the nice feelings at the time. Yes, I knew that the following days, I would be extremely uncommfortable, but I also knew that this would then return to a level, which was acceptable and that is how I coped. You will find your own coping strategies. May I say that over the years, I definately have more better days and manage to live an active 'normal' life. I would advise you to only shower and not bath, as I never use soap, talc or anything else in the area. I also stopped using tampons and even found that certain tiolet papers were better than others (I'm not sure if there are bleaching agents in some of them). I gave over using any sort of creams, as I have found that my own body eventually returns to a copable level. With any diagnosis, there is always anxiety and fear of loss of control and in the early years, I did question why me?, but now I am aware that I am not the only one, there are many other women like us. Never feel that you are on your own and believe that the situation will greatly improve, it just takes a little time.



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