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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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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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