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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, …

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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 …

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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 …

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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 …

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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 …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Who else has intense constant burning at the vaginal opening without provoking ?

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Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Mon Jun 16, 2014 7:23 pm

alien 
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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  Zbrown on Mon Jun 16, 2014 11:01 pm

Mines pretty constant yeah

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  meelie on Mon Jun 16, 2014 11:26 pm

Mines constant during the day, thank God it goes away at night while I sleep, I'm relaxed then. Pretty sure its muscles with mine.

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  ringostarr26 on Tue Jun 17, 2014 2:07 am

same here! constant burning...i too feel better when i am asleep lol some days i just can't wait for bed!

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Wed Jun 18, 2014 2:07 am

same! i can usually sleep okay. weird huh?!
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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Tue Oct 07, 2014 11:38 am

bumpy bump
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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  yoginimom on Wed Nov 05, 2014 5:15 am

Yep that's mine to a T. i've been diagnosed the same as you Tinkerbell.

I have been trying caledula baths for the burning, and i have noticed it's brought the inflammation down slightly.

What have you tried that's helpful?

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Fri Nov 14, 2014 12:28 pm

Hey girl! What's caledula? It's not something i've heard of! where are you from x
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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  yoginimom on Fri Nov 14, 2014 3:14 pm

tinkerbelle2 wrote:Hey girl! What's caledula? It's not something i've heard of! where are you from x

Oh i spelled it wrong. Smile It's calendula, marigold flowers. I got the idea out of 'ending female pain' ... you steep the flowers on the stove for about 15 min, or until it turns an amber color. Then strain and put it in bath water. It's supposed to reduce inflamation. I used a VERY small amount the first few times, because at this point i am terrified of anything reacting to me and flaring me worse. But it helped! Not by a lot, but there is a noticable decrease in pain after my bath for a few hours. So i'll take it. Smile

What all have you tried so far? Have you discovered anything that works well? I'm still trying to avoid the antidepressant angle, but i'm getting closer to acceptoing that i need to try something else. Sad

I'm from Canada. How about you?

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  meelie on Wed Nov 19, 2014 6:35 pm

Hi gang, just wanted to tell you that I have actually tried epsom salts soaks. I have always thought that epsom salts was salt but it's not it's magnesium. Makes you relax. Saw it on Dr. Oz. Tried it. It helped me feel better all over, I did get out and shower afterwards didn't know if it would dry my skin out or what so I washed it off. I put two cup fulls in a warm bath and soaked about 15 - 20 minutes I think. Didn't look at the clock. But I'm going to try it again today. Oz was talking about helping with magnesium deficiency and helps relax. Go figure. Smile

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  Guest on Fri Oct 02, 2015 1:55 pm

Hello, I have a question for anyone who's experiencing constant pain. I have this constant burning for the last 7 months and haven't had an hour without it. But my doctor told me that I do not have generalized vulvodynia but I have vestibulitis. My pain is localized but needs no provoker. Is this normal?

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  PainBlogger on Fri Oct 02, 2015 4:32 pm

To be honest, I think with the conditions of vulvodynia (which includes vestibulitis) anything goes. Some people have pain all the time, some only when provoked. I get both provoked and unprovoked pain, but I'm not usually in pain all day every day. I do get blocks of up to six/eight hours a time of virtually pain free some days, but then other days it kicks off every time I visit the toilet or sometimes just at random. I think a lot of what I've read implies that vestibulitis is generally a provoked pain, but, if one thinks about it, maybe it's getting provoked with you but lasting so long after the trigger has occurred that the blocks of time you're in pain are melding into a continuous phase. If that makes sense.

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

Post  tinkerbelle2 on Thu Oct 22, 2015 5:52 pm

PainBlogger wrote:To be honest, I think with the conditions of vulvodynia (which includes vestibulitis) anything goes. Some people have pain all the time, some only when provoked. I get both provoked and unprovoked pain, but I'm not usually in pain all day every day. I do get blocks of up to six/eight hours a time of virtually pain free some days, but then other days it kicks off every time I visit the toilet or sometimes just at random. I think a lot of what I've read implies that vestibulitis is generally a provoked pain, but, if one thinks about it, maybe it's getting provoked with you but lasting so long after the trigger has occurred that the blocks of time you're in pain are melding into a continuous phase. If that makes sense.

Hi Painblogger, yours sounds similar to mine! Mine varies in severity. It's not usually good days or bad days , sometimes, but for me it's more like good and bad moments within a day and can change drastically seemingly at random. If it's not that painful I can be distracted from it, if it's bad I'm in fire and it's all I can think about.
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Constant

Post  amyhp on Thu Oct 29, 2015 4:05 pm

I have a sore pain 24/7. The burning flares. Sometimes worse than others.

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Constant burning pain

Post  let's kick this on Tue Apr 26, 2016 12:20 am

I as well have constant burning pain and it goes into my rear too. My I wish these doctors could find something so many of us suffering. I did buy a vaginal probe for a tens unit and it helped a couple times. I use it 20 mins a day with estrogen cream.

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Constant burning

Post  let's kick this on Sat May 07, 2016 3:55 pm

I think the tens unit is helping the vaginal burning

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Constant burning

Post  Antaea on Wed May 11, 2016 8:59 pm

I too have a constant burning around the opening of the vagina. Most of the time in the clitoris and the inner labia too. Nothing helps. It gets worse during the day. The nights are real night mares. Then I feel it most. I try with lidocain and tramadol but now I shall start with Neurontin. I have a very demanding job. teaching flute and piano both in elementary school in the morning and lessons in culture school in the afternoon and evening. I dread every day.
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Constant burning

Post  let's kick this on Wed May 25, 2016 9:53 pm

Antaea,

I am now trying a chiro / homeopathic doctor she doesn't seem to be helping me yet. Tomorrow will be my 4th time she has put me on some natural pills but doesn't want me to use the tens unit while she is treating me. Have you been to a pain specialist?  I'm thinking that is my next step this is terrible I feel bad for you having to work. I sit on ice packs through out the day.

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RE: Constant burning

Post  Antaea on Thu May 26, 2016 11:32 am

I am without pain most of the time - the Neurontin (Gabapentin) has worked miracles. The side-effects are ceasing, even I cannot drive up to 17 hours after the last capsule.
I am convinced that it is of great importance to get advanced pain medication, Gabapentin, Pregabalin, Amitriptylin, Noramitryptolin) as early as possible. Topical ointments may worsen the situation.
After 3 to 6 months of constant pain, the brain develops so called pain-memory. The nevrons react like getting pain-impulses, even they may not exist. It is like having tinnitus, where you hear sounds which do not exist, due to nerve-damage. (Please excuse my clumsy way to explain. Sometimes, I lack expressions. Enlish is only my third language).

I got my diagnosis and treatment only 2 months after experiencing the first pain. But I had an episode 8 years before, and probably provoked V as a child. So I recognised the pain. Then I nearly lived in the Net to gather the necessary information and presented the symptoms for my GP so that he could not do otherwise than saying, "yes you have vulvodnyia. You shall start with the minimum dose of Neurontin" I am convinced, otherwise i wouldn not sit here on my donut pillow and without a screaming vulva.
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constant burning

Post  let's kick this on Fri May 27, 2016 3:34 pm

My chiro is having me try Aloe gel and Aloe drink I used it twice yesterday and it did help some!

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Re: Who else has intense constant burning at the vaginal opening without provoking ?

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