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» Vulvodynia is a secret
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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: 6

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

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

my life story

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my life story

Post  haykay23 on Thu Oct 17, 2013 3:36 am

My name is Hayley and I am twenty years old.  I have been recently officially diagnosed with vulvodynia.  For sometime now I have been hovering around the idea of having it but finally have a NP who gave me diagnosis.

Upon examination it was found that the mucosal glands around the vaginal opening were inflamed and very irriatated.  They hurt upon being touched and just felt burny/ sore.  She concluded that I had vv but it was localized and provoked.  She said that it was referring pain to my bladder, which made it feel like I had to pee, but the burning was actually external. I am currently on ETA cream, 7% lidocain, nortriptyline thirty mg, and ten mg of singulair.  My urgency symptoms still persist and seem to cycle with my period.  I am currently on mirocete after apri, which I was only on for two months and did not like.  I am currently sexually active but have not been since my current symptoms started most recently.  I have only had one partner and so has he.  I have also been checked for STDs, which I knew I did not have but I just needed to be sure.  I have had pretty bland diet and only drink on weekends and chose beer as it seems to be the least deadly choice. Basically what I’m looking for is if anyone else has had the 'gotta go symptoms', found a BC that works best, or has any tips for managing flares.  I am very stressed with school as I am in pharmacy school currently and have a heavy course load.

Last edited by haykay23 on Thu Oct 17, 2013 7:47 pm; edited 1 time in total (Reason for editing : needed to shorten)


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Re: my life story

Post  tinkerbelle2 on Thu Oct 17, 2013 10:37 am

Hey Hayley,

I'm Belle, nice to meet you Smile

I have read your story, sorry to hear that you've had such a rough time!

My vvd is slightly different to yours as I get the pain at 2 points one just inside and one at the opening. I really have no clue as to what triggered mine but I think it could have been a yeast or urine infection.

I too get that need to pee feeling, and sometimes it is very sore just after weeing. If I am at home I dab the area with a wet flannel afterwards. Currently the only relief I get is hot baths and swimming - the water seems to soothe the area. For others this would aggravate their problem further. I have also been using a topical spray called Xylocaine which is not actually meant to be used vaginally but is used to numb the mouth by dentists. The chemist said if it's safe for the moutg it should be okay for down there as it's similar delicate skin. I have also been drinking a lot of cranberry juice.

I think you should keep persisting with doctors, that's what I'm gonna do! It's great that you're close with your mum, I am too and it really helps.

Just remember you're not alone, the girls on this forum are really lovely and will be there for you and support you through whatever!

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Re: my life story

Post  haykay23 on Thu Oct 17, 2013 2:25 pm

Thanks for your reply.
I have found that taking aveeno oatmeal baths seems to help. The water seems to subside my symptoms.
Will have to look into the xylocine item.
Thank you for the support


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Re: my life story

Post  Sarah001 on Thu Oct 17, 2013 5:02 pm

Haykay please go and have your pelvic alignment and pelvic floor examined by a Women's Health Physio, the compression shorts could be helping because of an SI problem which could be tightening your pelvic floor up which does lead to UTIs because of incomplete emptying of the bladder (tight muscles don't allow the urine out easily) and a feeling of a UTI when one isn't present due to pelvic floor trigger points. If you do one thing to try and find the answer then please do see someone who knows about both pelvic alignment and pelvic floor trigger points as a first port of call.

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Re: my life story

Post  haykay23 on Thu Oct 17, 2013 5:05 pm

I have had mine checked and monitored but will look into other examinations. Thanks!


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