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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

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New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

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New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 9

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: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

Comments: 3

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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