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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
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» 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

» 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


HELP me pleeease

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HELP me pleeease

Post  bee22 on Sun Feb 19, 2012 10:58 am

Hi Everyone

I have just come across this forum today and I have finally realised I am not the only one out there.
My name is Bianca and I have suffered from a stinging and burning pain on the inside of my vagina as well as my clit etc being constantly tender. I have been depressed and humiliated for the past 2 years now and do't understand why this is happened to me ontop of my other uncurable conditions (vitiligo to name 1 other thing that is wrong with me) Sad
For the past 2 years I have not been able to have sex with my boyfriend of 3 years (i honestly don't know why he is still with me i feel like a complete let down). I also have not been able to insert a tampon or even my finger inside of me due to the intense stinging pain. I have wasted so much money on different doctors who have tested me for all different sexual dieases etc and can't find anything then giving up on me, as well as them telling me its all in my head!!! which its not.
Leaving me in complete tears and wanting to give up everyday.
I have just been researching Vulvodynia for the past couple of weeks. Does anyone feel that this could be my problem?? I just want to be able to have sex and be normal! (whiping the tears away from my face Sad... again). I live in northern NSW and would fly anywhere to see someone who can really help me.
I don't want to be the one who feels ashamed when all my friends talk about great sex and I hate not being able to feel the passion with my boyfriend like we used to years and years ago
All opinions and help is muchly appreciated

Bianca

bee22

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Re: HELP me pleeease

Post  smile22 on Tue Feb 21, 2012 4:14 pm

Hi, I'm sorry to hear that you have not had a proper diagnosis for your problem. I have vulvodynia which is 24/7 chronic burning and it has totally taken over my life, so I understand your pain with your relationship and not being able to enjoy girlie chats with your friends, those little things are so upsetting. Please note that my case is pretty extreme and if you do find out that you have vulvodynia there's lots of women on here who have relief sometimes through different meds and they find ways of coping, so hopefully you can too Smile.

It does sound to me like it may be vulvodynia related, you have to keep pushing and pushing your doctors, go into their offices and cry like you do at home, tell them you have NOT got an STD as you have been tested before, just keep persisting until they refer you to a proper gynaecologist..can't help you with finding one as I live in England, but it took me about 3 and a half years to get to see one of the top consultants in gynaecology here and even he's crap ha ha! it's hard but you will eventually find a doctor who knows a bit more about it. My vulvodynia seems to have been caused by me going on the pill which caused recurrent thrush (yeast infections) which seems to have damaged my nerves, does any of this sound familiar to you? Have you ever tried yeast infection treatment - creams, pessaries, oral tablets? If I was you I would ask to be tested for a yeast infection if you haven't already just to rule it out as lots of doctors mistake vulvodynia for this. Then once you have ruled that out, you can really start to have more of an idea about what your problem might be. Also, I'm really not sure how things work in other countries with doctors and stuff, but maybe if you go to your regular doctor and mention vulvodynia, they may be able to come up with someone a bit more helpful to link you to who is near to where you live.

Sorry if this message wasn't much help but I know that you feel so helpless and clueless about what is happening right now and I just wanted you to know a few little things to get you started on the process of finding out whether you have vulvodynia. Like I said, your symptoms do sound all too familiar to me, but I am not a doctor and I'm not going to say that you definitely have it because there is always a possibility that it could be something else that is simpler and easier to cure. Please don't give up and remember that girls like me on here really understand what you are going through and I only found this site about 2 weeks ago or something and I have spoken to lots of helpful and caring people. You certainly aren't the only one so don't feel alone, I know it's hard but eventually you WILL get a diagnosis for your problems. I wish you all the best and I hope that you find a good doctor who is sympathetic and understanding, there is not many out there who specialise in vulvar pain..not where I live anyway! Good luck and try your best to think happy thoughts Smile x


smile22

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Re: HELP me pleeease

Post  kirsty on Thu Feb 23, 2012 11:53 pm

Hi Bianca,

I only suffer from provoked vulval pain (i.e. during sex, or (manageable) with a tampon), but I know exactly where you're at emotionally and wanted to first and foremost remind you that it will not always be like this. Because sex is such a big thing in our society, when you suffer from this kind of thing you can easily get yourself into a terrible low that feels like you'll never get out. I've been there - crying everyday, thinking about it all the time. Not only can the pain it be improved by various treatments (once you've found a good doctor), but the emotional state you're in will improve. Looking back over the last few years, there have been periods in which I've been terribly depressed about it all, and these aren't necessarily the times at which the pain was worst - just when I managed to persuade myself it was the most dreadful thing in the world.

The point I'm trying to make is that even if the journey is long, please believe that you can be seeing doctors and persevering with treatment without it taking over your entire emotional life. Do find a doctor who takes you seriously - if you find one that says they have experience with vulvodynia, then they will take your condition seriously, whatever diagnosis they decide to give you. It is not, I repeat not in your head.

<Hugs>

kirsty

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Re: HELP me pleeease

Post  bee22 on Fri Feb 24, 2012 1:11 am

Thankyou both for your support! As bad as it sounds, its good to hear I am not the only one. I went back and sore my doctor yesterday and explained to her what I had researched about Vulvodynia. She has been very supportive but admitted that I was teaching her about the condition!
She did say that I had Vulvodynia and the estrogen cream I have been using is offering a teeny bit of help, however I am unable to put it inside my vagina due to the immense stinging. My stinging is only located in 2 spots and feels like a bee sting, does anyone else get this?
This doesn't allow me to be able to use tampons which sucks even more in the hot weather when I cant leave the house becuase I am wearing a big pad Sad
We have decided to try a combined mix of Free testosterone and estrogen (sorry if i have named it wrong, its off the top of my head) which i can apply before i go to bed, and am really going to try go past the pain barrier and place inside my vagina.
I have read alot about the use of dilators? I don't know whether these wil benefit me with my stinging etc (it doesn't seem like they would lessen the stinging pain inside) however i have read a few ladies thought it wouldnt work but the dilators have. I just don't know how i will be able to put it inside of me .....eeekkk (ouchy) Sad

I would just like to also mention that the I had a great chat with my doctor yesterday, and we talked about all the failed treatments and doctors who told me i was making it up, there was nothing wrong with me and it was in my head. And was horified to learn that the gynocologist I saw over a year ago (when i was 17) may have just dismissed me because I was young and was not important compared to women who were 10 or so years older then me. She had heard this from other doctors aswell! I was disgusted when i heard that as it was emotionaly and physically painful the way he treated me when I visited him. Just for the record I was already in a comitted relationship with my boyfriend for nearly 2 years and still am over a year down the track! He made me extremely angry. Sorry for my vent :s

I will also pass on if I get any results from this new treatment plan (fingers crossed)

Smile xo

bee22

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Re: HELP me pleeease

Post  smile22 on Fri Feb 24, 2012 4:29 pm

I'm happy to hear that you have a diagnosis but I am sorry that it is vulvodynia Sad it's such a bitch!

I don't believe in dilators unless your problem is on the road to recovery, because I believe that dilators are really to get you used to having something inside of you, and if you aren't getting any relief from medication then realistically irritating the area further would make it worse. That's just my opinion though, as I said before I have it really bad to the point of not going out, so it could help you perhaps when you are a little better though and thinking more about trying to be able to have sex and all that again.

That's good that you had a good talk with your doctor. I once saw a doctor who told me that I shouldn't be bothered that it's hurting me all the time as there's nothing they can do and that I should just get better at oral sex so my boyfriend is happy. He also made me do some tense test thing where they put fingers inside and see if you are tensing without realising, but to suggest this to someone who is already in a hell of a lot of pain is ridiculous. I was 16, very embarrased and confused at the time so didn't complain or say anything back to him and I cried for a week afterwards. Insensitive and rude doctors like that and the one you saw shouldn't even be allowed to be doctors. Good luck with starting your creams and whatever other treatments, hope you get some success! x

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Re: HELP me pleeease

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