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» What helped (and practically cured) my Vulvodynia
Today at 4:43 pm by Katiej

» How I cured my Vulvodynia!
Today at 8:24 am by Katiej

» Amitriptyline given for vulvodyina pain
Sat Nov 18, 2017 11:33 pm by WVR00

» Needing some reassurance
Sat Nov 18, 2017 12:28 pm by Katiej

» Amitriptyline Success and new-found love
Sat Nov 18, 2017 12:24 pm by Katiej

» New diagnosis, any advice whilst I wait for a specialist
Sat Nov 18, 2017 3:57 am by jungleclover

» Vestibulectomy today and no pain
Fri Nov 17, 2017 3:28 pm by Dsrt16

» vestibulectomy success
Thu Nov 16, 2017 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Thu Nov 16, 2017 12:06 am by Jgreen81

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: 3

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: 1

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

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


New to Group, scared and depressed

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New to Group, scared and depressed

Post  Coldchris on Thu Jun 09, 2011 6:29 pm

Hi Everyone:

So glad to have found this site. This is my story. I had an UTI. After UTI, yeast infection, treated by diflucan, cream and OTC monistat. Did not get better. Many trips to dr. Treated shabbily. Went to Seattle (I live in Alaska) to a specialist who said I had a hyperimmune response to the yeast and had swelling and inflammation. Got some cream to use 2xs a day for 6 weeks to help get it in check. Mid way through, got an absessed tooth and had to go back on antibiotics (still on them). Had antibiotics (pro biotics to balance them), vicodin, advil, tooth numbing injections, etc. Urine was like acid I bet and really irriated the heck out of inflammed vestibule. Sitz baths and keep on the cream. Started using domeboro sitz baths but I think this may be trying out the rest of my skin. (Has anyone tried Aveeno?) I am struggling with this and feels like it just keeps coming. I'm scared, depressed and feel very alone. Go back to specialist next Wednesday. Did anyone else feel so overwhelmed and depressed?

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Forgot to Add

Post  Coldchris on Thu Jun 09, 2011 6:33 pm

Pain is in my vestibule. Was like razors, but the sitz baths seem to be helping, but seem to be itching on lips now. I'm about to have my period, does anyone else have flare ups around this time?

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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Thu Jun 09, 2011 7:29 pm


Welcome to the forum and hope you feel you can let out your feelings on here

I was recommended Aveeno by the Vulval dermotologist..am gonna deff try it. Got a huge bottle. She said that it helps to moisturise the area and get the vulvar used to touch and calm the nerve endings down.

Myself and if not every member has at some point felt extremley low and depressed. I didnt want to go on anymore. It is also a very isolating condition which is why I set up the forum in the first place. I'm sure if we all had sore and painful arms or legs we would feel more able to talk about it with others but because it is our sexual organ it feels so taboo to talk about!

Your not alone with us and if you wish we also have a secret facebook group you can join. Posts do not appear on your profile or newsfeed

Let us know how the steriod cream goes and try anything you feel may help you. A lot of this is trial and error and wading through tons of creams, meds etc until we can find the right combination.

Do not give up...I am managing better than ever now. Am on 300mg pregabalin and biofeedback as mine is most deff due to an unstable pelvic floor. I have even managed to start having sex again..so remember we can get better




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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Thu Jun 09, 2011 7:33 pm


Oh forgot to mention..I deff get flare ups just before my period and then around the middle to the end. This is very common in women with V. I think it is a combination of the hormones, womb cramps (im sure they gotta effect the pelvic floor) and the pads/tampons we have to use.

I use the softest pads I can find. The Always silk or Boots cottons seem to work best.

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Re: New to Group, scared and depressed

Post  Sarah001 on Thu Jun 09, 2011 7:36 pm

Yep the antibiotics, yeast treatment, UTI all sound alot like how some of us started with this. I for one got to the point where I didn't know how to go on with this pretty quickly but found learning alot about the subject helped. Read books such as Amy Stein Heal Pelvic Pain or When Sex Hurts and you'll soon see you're far from alone in this. Definitely get your pelvic floor checked too, I've been doing something recently to my tight pelvic floor that helps quite a bit so like Sebby I'm in the hypertonic pelvic floor group.

And Sebby, holy moly you're having sex now? Fantastic! If I get to that stage I'm wondering where I'll find someone to actually have sex with! Laughing
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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Thu Jun 09, 2011 7:47 pm


Yeah, I found a fella! ...really dunno how I did that! Well actually we were flirting at work and I drunk texted him one evening and it all went from there lol

We only had sex a few times but I am managing to relax more and more. I still havent got hold of the new biofeedback sensor. Havent got back to Dr Glazer yet to say it not turned up yet.. yeah its naughty of me..the boyfriend kind of distracted me!

I did tell him I get pain etc and explained I couldnt always have sex etc...he dont seem to mind anyway and he like the kindest man I have ever met!

cheers


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Re: New to Group, scared and depressed

Post  gem123 on Thu Jun 09, 2011 8:16 pm

hi i have just got back from a appt with a dermotologist and she has also said the same to me about thrush so i will be starting of a 3 mth treatment soon, i know how you feel i have been really down the last few weeks but i am feeling a bit more positive i have just ordered the aveeno oatmeal satchets to try i will let you know what there like, i just wanted to say you are not alone and thinking about you

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I think we have all been there

Post  annaCA on Thu Jun 09, 2011 8:56 pm

I think we have all felt depressed, lonely, and fear that the pain will get worst. I know I felt it this past week as on top of v, I got a possible uti and have cramps from my period. I definitely get worst right before my period and right after. It is pretty exhausting going to all the doctor appointments and trying out new medication and dealing with the side effects. This board has definitely helped me even just by reading other people's posts and knowing I am not alone in this and that although we each have a different story, we have a lot of similarities. It was really helpful for me knowing I wasn't a freak and that more people than you think have this condition. I am trying to take each day as it comes which I feel is harder than it sounds. Hope you are feeling better!

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Re: New to Group, scared and depressed

Post  Coldchris on Thu Jun 09, 2011 9:51 pm

This just feels like hell mentally and physically. It has knocked me for a loop. It's just too much. I am normally happy and outgoing, but this is making my life miserable. I work full time, have a five year old son (very best thing), a supportive husband, but how much more can I do here? I'm trying things, following doctor's orders, and I'm just feel beaten.

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Re: New to Group, scared and depressed

Post  Coldchris on Fri Jun 10, 2011 12:30 am

Would love to join facebook group, sebby! Love it.

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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Fri Jun 10, 2011 7:25 am


I have inboxed you with details regarding the facebook group Smile

Take one day at a time, sometimes thats all we can do and know that when we get the real bad flare ups it will calm down..Im on my period at the moment and OUCH! I cant use the softer pads at the moment as I am real heavy and these big old pads are rubbing! Shocked

In the meantime we can at least support each other and have an outlet for our feelings knowing that others know exactly how you feel Smile




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It's ok!

Post  Louise on Tue Jun 14, 2011 10:57 pm

We are all here for you & yes your story sounds a lot like how mine started! You are not alone I can totally relate to how you feel ! x x x

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Re: New to Group, scared and depressed

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