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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


Vulvodynia??? What do I have?????

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Vulvodynia??? What do I have?????

Post  katie220 on Sun Sep 30, 2012 7:09 pm

Hi, I'm new to this website. I decided to go here because there just aren't very many people to talk to when it comes to this topic. I've been suffering from a "mild" (actually extremely irritating) burning throughout my vagnia for the past year and a half.

At first I thought I had a yeast problem, so I went to the store and bought some monistat. Didn't work (not surprising). The pain was so bad at first that I would cry. Luckily the pain became less severe over time but it's just this lingering, irritating thing that will never go away.

I have seen probably five doctors over a year and a half. They told me I had a bacterial problem and gave me round after round of anti biotics that never worked, not even temporarily. He did a "Q-Tip test on me that didn't hurt, so he told me a didn't have vulvodynia and kept saying it's "extremely rare" over and over again. Then a doctor prescribed me with boric acid suppositories that didn't do anything either. I have tried everything. I even quit smoking and drastically lessened my caffeine intake which hasn't minimized it that much.

Could any of you give me your opinion? Do you think I have vulvodynia or something else? At this point I am tired of seeing doctors and I just want it to go away.

katie220

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Re: Vulvodynia??? What do I have?????

Post  abovetheknee on Mon Oct 01, 2012 9:18 am

Hi Katie

Doctors do like everything to be black and white dont they? Your story so far sounds alot like mine, ie showing ones private parts to a wide selection of medical folk who ALL say 'well I cant SEE anything wrong, maybe a little red.....hmmmm have you tried anti fungal??' - very frustrating. Have you asked your doctor to refer you to a vulval clinic? do you have those in the states? Someone there should know about Vulvodynia. I dont think the 'q-tip test' is that great really - I had the exact same test & I really didnt feel it meant anything. The condition can vary so much from person to person, just because on a particular day you can touch it gently with a q-tip and its not agony does not mean you have nothing wrong down there. Vulvodynia can be touch sensitive or the pain can just spontaneously happen OR it can be a mixture of the two, which is what I have, & for a long time I thought because it didnt fit neatly into the various 'official' diagnosis it meant I must have someting else/I was a freak. Not so. And it can vary so much from week to week, day to day. So dont give up, dont take any more thrush/yeast treatments or any of that stuff unless you are sure it actually IS thrush, & insist on seeing someone who actually knows what they're talking about.

There are some treatments available to try for vulvodynia, and after reading alot of the posts on this site it seems to me that for some women, some of the treatments really do work. SO there IS hope, dont give up, read up on it, & then when you do get to see a specialist you'll be able to have an informed discussion & be able to work out what treatments you could try. I think its good you're trying to do something about it & that you have engaged with this forum - I wasted alot of time trying to pretend it wasnt happening & would go away by itself. I now think that is unlikely.

Best of luck to you, I really hope you shift it!!

abovetheknee

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Re:

Post  katie220 on Mon Oct 01, 2012 6:31 pm

Thanks for the reply and finally someone understands what I mean! I don't think the Q-tip test is all that accurate either. My doctor just relies on that to diagnose me and nothing else. I went to another doctor and she sent me to a pelvic floor therapist although I kept telling them it's not muscle tightness that is giving me an issue. I'm almost positive it is hormonal because I can track on a calender how bad my pain will be. It is 90 percent gone when I ovulate and progressively gets worse as I get closer and closer to my period. I have a feeling it is a low estrogen problem and my doctor put me on low dose birth control of all things. When I take them I have pain all month.

Do you know of a website I can go to that can refer me to a specialist? I live in the midwest and we don't have that many specialists around here Sad

katie220

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Re: Vulvodynia??? What do I have?????

Post  Alana3 on Mon Oct 01, 2012 8:37 pm

Hey Katie,

I live in Florida and just went to an amazing doctor here today- I feel like he's going to be awesome and he's a specialist. There is also another specialist in Orlando (I didn't like her) and another one in D.C. and New York. This is definetely something that can be made better. And acupuncture has helped me a lot. Message me if you need any advice or the doctors names that I have used. Be careful I was put on 27 scripts and acycolvir which is a herpes drug, I don't have herpes! They said it could help. This doctor said it was BS. So be careful, and if it doesn't sound right it probably isn't. Don't put lots of stuff up there it irritates it worse.

Alana3

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Re: Vulvodynia??? What do I have?????

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