Vulvodynia Support
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» Hope to all my suffering ladies
Who else has intense constant burning at the vaginal opening without provoking ? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Who else has intense constant burning at the vaginal opening without provoking ? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Who else has intense constant burning at the vaginal opening without provoking ? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Who else has intense constant burning at the vaginal opening without provoking ? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Who else has intense constant burning at the vaginal opening without provoking ? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Who else has intense constant burning at the vaginal opening without provoking ? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Who else has intense constant burning at the vaginal opening without provoking ? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Who else has intense constant burning at the vaginal opening without provoking ? EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Who else has intense constant burning at the vaginal opening without provoking ? EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

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 …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


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

+5
yoginimom
ringostarr26
meelie
Zbrown
tinkerbelle2
9 posters

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

Post  tinkerbelle2 Mon Jun 16, 2014 7:23 pm

alien 
tinkerbelle2
tinkerbelle2

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Post  Zbrown Mon Jun 16, 2014 11:01 pm

Mines pretty constant yeah

Zbrown

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Post  meelie 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.

meelie

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Post  ringostarr26 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!

ringostarr26

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Post  tinkerbelle2 Wed Jun 18, 2014 2:07 am

same! i can usually sleep okay. weird huh?!
tinkerbelle2
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Post  tinkerbelle2 Tue Oct 07, 2014 11:38 am

bumpy bump
tinkerbelle2
tinkerbelle2

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Post  yoginimom 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?

yoginimom

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Post  tinkerbelle2 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
tinkerbelle2
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Post  yoginimom 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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Post  meelie 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

meelie

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Post  Guest 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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Post  PainBlogger 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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Post  tinkerbelle2 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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Post  amyhp 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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Post  let's kick this 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.

let's kick this

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

I think the tens unit is helping the vaginal burning

let's kick this

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Post  Antaea 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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Post  let's kick this 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.

let's kick this

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Post  Antaea 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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Post  let's kick this 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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