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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 …

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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 …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci


I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

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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Re: my life story

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