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» Vestibulectomy today and no pain
Today at 3:28 pm by Dsrt16

» vestibulectomy success
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» MY STORY & Vestibulectomy 2/8/17
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» Pain aftee vestibulectimy
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» Freaking out because I don't think surgery worked HELP!!!!
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» Vulvodynia help
Wed Nov 15, 2017 1:04 pm by ekaterina1996

» FACEBOOK VULVODYNIA SUPPORT GROUP (SECRET)
Tue Nov 14, 2017 9:53 pm by Dsrt16

» Needing some reassurance
Sun Nov 12, 2017 3:04 pm by Nicmay

» Vulvodynia burning mouth and bladder discomfort
Fri Nov 10, 2017 7:26 pm by Zbrown

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 …

Comments: 3

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: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

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: 0

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 …

Comments: 4

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 …

Comments: 0

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

Hello,

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


Looking for guidence

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Looking for guidence

Post  Hodg72 on Sun Mar 31, 2013 4:27 pm

Hi to all

I guess I am looking for others with similar symptoms/experiences to mine, and looking at some of the posts I think I might find some here.

I have experienced itching, burning and some pain 'down there' for about 15 years. For 12 of those years I thought I had recurring thrush, and treated the problem accordingly. I had many swabs over the years, but was never actually told that they swabs were negative - so I subjected myself for the harsh treatments for years unnecessarily! Finally my Gynae looked in my file and asked why I was going through all the courses of treatment when I had always come back negative??!! (GRRRRR).

We them looked at other things such as dermatitis etc, and I was given steroid treatments to try. Nothing has really helped, although there are some (very few and far between) months when I DON'T suffer. That is the other thing about me - my symptoms are definitely ciclical (although this was poohoo'd by my Drs).

So - finally I was referred to a dermatologist to look at allergic causes - and after waiting for many more uncomfortable months I went through patch testing. I tested positive to an allergy to Balsam of Peru (has anyone heard of it??) and nickel. So - I have cut these products out of my life as best I can (Balsam of Peru is little heard of but in EVERYTHING! Especially in producst you are likely to use 'down there'. I have been looking on forums, and products suggested to me to use as an anesthetic or cooling gel seem to contain it (anything with Benzoayte, basically!)

My Dermatologist did suggest that I may have Vulvodynia, esp if my patch tests came back negative. I am wondering if this is in fact the case, as my symptoms are not always visble (especially when I get an examination) and also the sensation can be on one side, then shift front, back, other side, etc etc. I hve read that itching is not usually a symptom for this condition, through.

Any help GRATEFULLY received

thanks all

Hodg72

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Re: Looking for guidence

Post  jen007 on Sun Mar 31, 2013 4:52 pm

Hello Hodg72 and Welcome to the forum!

I've had vulvodynia for 5 years now. I too had itching and burning pains "down there" for a long time, mostly caused by chronic yeast infections. A lot of the time, vulvodynia is misdiagnosed as a bacterial infection. Theres a few ways to tell if you have vulvodynia...at least that I know of. Let me know if you answer yes to any of these questions:

Are you now on or have ever been on birth control?
Do you have any food allergies?
Do you get reoccurring yeast infections?
Is the pain constant or is it provoked? ....meaning does it hurt all the time or does it only hurt when you touch "down there?"

The allergy you mentioned could be the issue, but if you took all of it out of your daily routines, things should've gone back to normal. Also it isn't unusual to have periods of no pain. I always had pain...but only provoked pain, but a few women here have talked about going through a few months pain free or even a few years and then it comes back. Not sure why...this is a very strange disorder, in my opinion. I'd recommend finding a vulvodynia specialist if you have one near you. If you do have vulvodynia it is important to get some help to keep it under control.

-Jen

jen007

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Re: Looking for guidence

Post  Hodg72 on Sun Mar 31, 2013 7:05 pm

Thanks, Jen

In answer to your questions:

It seems that although I had suspected yeast infections, it wasn't so.

Food allergies would be the nickel and Balsam of Peru - both are present in both food stuffs and other products. I have ben advised to avoid tomatoes (Nickel) and the presence of B of P, and things that are similar (cinnamon, cloves, citrus peels etc etc) It is nigh on impossible to avoid in products AND food, but I've been doing my best by changing shampoos, any other bathing products used elsewhere on my body (I have not used products in the effected area for years) washing powders,, cleaning products etc. Really made no difference except to my bank balance!

When I get the symptoms, they are fairly constant, this month has been worse than recent - I am towards the end of my period and still in a bad way - normally things start up halfway through my cycle and finish as my period starts (hence my notion that my issues are cyclical and flare-ups with hormone levels). Sex is very uncomfortable both during and afterwards.

I am having acupuncture this week (haven't had since our long quest for a child (he's four and asleep upstairs!) - and am hoping she may be able to help me.

Thanks again for your response - other than my husband and Drs I haven't really talked about this before -As I said to my husband this morning, due to the nature of the problem, it isn't really easy to discuss, like evident skin problems behind you knee!

Fliss

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Re: Looking for guidence

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