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

» vestibulectomy success
Yesterday at 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:06 am by Jgreen81

» Pain aftee vestibulectimy
Yesterday at 12:03 am by Jgreen81

» Freaking out because I don't think surgery worked HELP!!!!
Yesterday at 12:01 am by Jgreen81

» Vulvodynia help
Wed Nov 15, 2017 1:04 pm by ekaterina1996

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


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


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

just needed to say.....

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just needed to say.....

Post  Kelle_Belle on Thu Nov 22, 2012 4:01 am

I really have tried to cope with this, the pain and the never ending discomfort, I have done everything I've been told to do, but nothing seems to work. I'm taking the highest dose of gabapentin I can take, also an anti depressent. Neither weem to have helped. I seem to have a couple of good days then the pain starts and i slip back down into depression. Its such a cruel isolating condition. My mum is getting sick of me, my friends are getting bored of me, my doctors treat me like an attention seeker and I think I'm going to lose my job soon.
I always said I would end up alone, but through my own choice. I'd finally gotten to a stage in my life where I actually liked myself, I had confidence. Now all thats gone, the choice has been taken away from me.
Its nearly 4 in the morning and I'm tired and in pain but I dont want to go to bed because I know I will wake up and the pain will start. I can feel myself trying to become invisable, avoiding calls, ignoring texts, I want people to forget me because the person they knew is not here anymore.
When I wake up and the pain starts I feel this horrible mist comes over me and I wish to god I'd never woken up. Being possitive has left me exhausted and weak. I really cant see a future for me through all this. I'm so angry that this has happened to me, its so cruel, I've never knowingly hurt anyone, i always try to make others happy, i was just poddling along in my small but happy life. I just dont understand.
I havent written this for attention, I have written this because i have no one else to talk to so I figured typing it out of my system might help. So now I'll go to sleep, I'll fight it as long as I can but i know I cant survive without it. I really dont know if I want to survive to be fair.
To anyone who reads this, I wish you well, I hope your pain free and your strong. I hope you have people supporting you. I hope your loved and not alone. Goodnight x

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I understand

Post  evanrude on Thu Nov 22, 2012 4:25 am

I feel the same way sometimes. I tell myself I must have done something so horible to deserve this, but I really
am a nice caring person.
I feel that no guy will want to ever stay with me. I can't blame them though.

But remember we all deserve to be happy and be loved. This has got to better someday.
I'm convinced that VV is caused by a reaction to our own bodily fluids. I think our own
discharge is irratating our skin down there. That's my theory.

Please hang in there. You're not alone.
You did the right thing in venting on this forum. That is what it is for.

Hug to you.


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Re: just needed to say.....

Post  Kate1981 on Thu Nov 22, 2012 10:16 pm

Kelle Belle

im totally with you I feel the same. Im not far away from you just on the opposite side of uk near manchester. I am also same age. I had a horrid break up last year after 9 years and was heartbroken I pulled myself together and worked like mad to save for my own house. I finally got my own home then bang I have v. I havnt been able move in bcos i cant afford the bills i am also potentially going to lose my job. Im long haul cabin crew so there is no way I can fly in all this pain. I feel ive lost eveything. Im not me anymore I feel like an existance that no one wants to be around. I feel alone and worthless. I have always been a good person and never slept around as I am so protective of myself and catching something then I get v a life sentence.


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Post  lavrose on Fri Nov 23, 2012 1:35 pm

Im 32, and I went thru what your going thru for years. Thru essential oils, Ive finally gotten my vaginal pain under control, )I feel cured) and Ive gone 6 days without putting oils inside, but now I have interstital cystitus, which is more painful and far worse(a bladder infection 24/7) that there is no cure for, never goes away. Antibiotics make it go away, then it comes back a week to 2 weeks later. You cant even sleep thru the night as you have to get up to pee, 20 times a nite, and your uncomfrotable all the time.

Its a drug resistant bacteria.

I have some anger issues with God at this point now.

Its my destiny to be cursed in the nether regions, and Ive considered suicide as interstitial cystitus is so much more painful than vulvodynia, which Ive dealt with nonstop for years, ever since I lost my virginity. Its not that you cant have sex. Its that your in pain, every moment of your life, to where you cant get out of bed.

Its the darkest most awful thing Ive had to go thru, and being someone with severe cliniacal depression, whos suffered in every aspect of my life, (Ive had a very hard life)
I have my daughter and with her things are better.
Before the bladder thing, I felt confidant, and ok, with myself and life, and for the first time, happy, and at peace. Well adjusted as Id never felt that before.
Then this happens to me, and Im a really nice person.
I guess bad things happen to good peoplem it doesnt matter

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Post  lavrose on Fri Nov 23, 2012 1:38 pm

I will say that I cured my SEVERE vulvodynia with essential oil suppositories, and a better diet, supplements, vitamins and most of all probiotics.

Bt now I have an incurable bladder infection, that Ill have to go disability for.

Its cruel. A cruel joke

and forget about relationsips.

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Re: just needed to say.....

Post  Alana3 on Fri Nov 23, 2012 2:30 pm

Hold up are you it's an infection and not Ic? Most infections can be taken care of by antibiotics. Ask your doc to culture your labs and see which antibiotics kill thebinfection in the lab. That way you aren't pumping chemicals in your bosh and proceed from there. I had the bladder issue too mine just went away with time if that helps you at all. I also started taking a cranberry supplement


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Re: just needed to say.....

Post  Sarah001 on Sat Nov 24, 2012 1:47 pm

kelle belle I think a good direction for you to go in is to ring your local hospital and get put through to the physiotherapy department then ask if they have a Womens Health Physio and if so get her to have a word with you about being referred for pelvic floor/pelvic pain physio sessions. If you haven't got one at your hospital (I think you will have) there's David Nunns at Nottingham who you can be referred to and he has a team of physios who work there for him treating women with vulvar pain. If you haven't ruled out dermatological issues (assuming there's anything to see) there is a specialist vulval dermo called Dr Julia Schofield who visits various hospitals in the area on a monthly basis so you can ask to be referred to her by either your GP or local GUM clinic if you have visible signs that might mean a dermotological condition. Remember vulvodynia only means "pain in the vulvar" and isn't a condition or disease in its own right so establishing the cause should be your priority. If you haven't already get a copy of the book "When Sex Hurts" as it talks you through the various causes and helps you figure out where to go next.

lavrose as far as I'm aware IC isn't caused by a mystery bacteria and if you respond to antibiotics it would imply you are actually having recurrent UTIs rather than have IC and also lots of women with IC respond very well to having their pelvic floors released so it might be a good idea for you to try that route too. I'd be careful of all the oils you are using in the area, some won't do much harm but you do seem to be using rather alot and oil in particular can make it easier for bacteria to get into the urethra plus changing the ph of the vagina with lots of oils will also make you more prone to UTIs plus bacterial vaginosis so be careful.

I think we've all been through the life isn't worth living feeling and the best way forward from that is to get busy figuring out why you have the problem and what you need to do about it, most doctors abuse the term vulvodynia because they don't rule out all known causes before they slap that "diagnosis" on us so it's up to us to rule out infections, skin conditions, musculoskeletal causes, allergies etc and it's surprising how far you can get without needing your GP especially if you have a decent GUM clinic which is how I made headway in the beginning. It's often not necessarily the way it begins that's the clue as it tends to start suddenly anyway but look at any other health issues you have and try to establish if they could be connected. Research but don't get put off by women saying it can't be cured, the reason for this is that's what they get told by doctors who don't look for the cause because without looking for the cause of course a doctor will talk about it like it's mysterious and incurable whereas if you really have a pelvic floor issue the diagnosis should have been pelvic floor dysfunction which is very treatable, likewise if it's a skin condition or allergic reaction so definitely put some time into becoming your own doctor for this health problem because GPs don't really get pelvic pain at all unless it's something they can throw drugs or surgery at.

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Don't give up.

Post  katie220 on Tue Nov 27, 2012 8:31 pm

Don't give up! I know it really hurts physically and emotionally to have this. I live in fear of my boyfriend leaving me all of the time. But remember that people get over this problem every day. Do EVERYTHING YOU CAN! Get rid of all sulfates in your cleansing routine, change your diet and remember to go easy on the stimulants. I have even found that birth control makes it far worse. You'll be pain free, I promise. There is always hope.


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Re: just needed to say.....

Post  Dandsforever on Tue Nov 27, 2012 11:56 pm

I feel the same way! My vulvodynia came back after three years of painfree sex. Im having panic attacks cause I remember how awful the pain is.. Im starting to go into depression again. Sad


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Re: just needed to say.....

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