Vulvodynia Support
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» Hope to all my suffering ladies
hey, I did this EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
hey, I did this EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
hey, I did this EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
hey, I did this EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
hey, I did this EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
hey, I did this EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
hey, I did this EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
hey, I did this 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!
hey, I did this 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


hey, I did this

4 posters

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hey, I did this Empty hey, I did this

Post  grassy Tue Jul 17, 2012 8:26 pm

Hey you guys, I'm a member here, but rarely post. This is what i did. And I am alot better. NOt totally cured, but not crying all the time. I took diflucan, one per week for ONE year! my story all started with one yeast and the burning never left. I was desperate. But anyways, my primary doc put me on diflucan. One per week for as long as i needed. I talked with all kinds of people, And we just guessed that maybe it was a yeast hypersensitivity issue. I'm not a doctor, and i wouldnt do this unless supervised by one. But it did help, and it did take that long too. Long long time. my theory is, that the diflucan kept the yeast down, lessening the hypersensitivity. Long enough for the skins to semi heal and some of the pain to leave. Like i said i'm not cured from the vulvodynia, but am able to think about something else besides the pain. Basically the diflucan didnt bother me much either. But it does have a tendancy to increase v discharge. Hope that helps someone. Maybe something to talk over with your doctors. cindy

grassy

Posts : 52
Join date : 2011-07-04

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hey, I did this Empty Diflucan

Post  Rainy Day Sat Jul 21, 2012 8:39 pm

That's interesting. I prob couldn't do that since I am so sensitive to 'real' Rx drugs...but it means I am definatly interested in exploring the yeast connection still...

I am so pissed that most of us have to figure out this thing by ourselves. Doctors suck.

Rainy Day

Posts : 54
Join date : 2012-07-19
Location : US

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Post  stacym918 Sat Jul 21, 2012 10:13 pm

grassy, are you still taking the diflucan?
I too did long term diflucan, about 3 and a half years ago. It helped, while I was on it, but once off, it did not keep my symptoms at bay.

stacym918

Posts : 6
Join date : 2012-07-15

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hey, I did this Empty Stacy- how long did you do diflucan for?

Post  Rainy Day Sun Jul 22, 2012 2:44 pm

My doctor only allowed me to do 3 pills for 3 days...and said, "if you aren't better by 3 days, it's not yeast). Grr.....

Rainy Day

Posts : 54
Join date : 2012-07-19
Location : US

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hey, I did this Empty Interesting

Post  BpCookie Sun Jul 22, 2012 3:08 pm

This is the second or third story that Ive heard like this. I talked to my Gyno about it and she thought it was interesting and was willing to try it. She said that I may have become allergic to my own yeast . Unfortunately I was only able to try two months of treatment and she ended up leaving the practice. Perhaps I will talk to one of my other Gyno's.

Take care everyone and keep those vagi-gi's cool.
BpCookie
BpCookie

Posts : 209
Join date : 2012-01-25
Location : Arizona

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hey, I did this Empty ok you guys

Post  grassy Sun Jul 22, 2012 6:48 pm

Hi everyone. Ok but I am one of those people who are really sensitve to medicines. I almost died from the sulfa antibiotic that started all this. So with that being said, the diflucan didnt bother me much. I had a male PA who didnt know what to do, so he went along with my idea, and i followed along with another lady who had a very bright V specialist. Her specialist thought it was her body hypersensitive to her own yeast, even if its a normal amount. My opinion on the diflucan? for what its worth. I dont think it is a yeast cure. Its just a help.They market as a one pill cure, but i dont believe that.
One a WEEK FOR A YEAR. Then I was feeling better, and tried to go off it. V flared up. So I went like three weeks with no diflucan, then took another pill. Did that a few times, and now I am basically off it. weaned myself off. I would say honestly that I feel 3/4 better. At least not crying over the pain. Not all the way cured tho. But if you want to try it, do it under a doctors supervision, because diflucan is hard on the liver. Then maybe a person could see how it goes, maybe a few months. But one to three pills Isnt enough. I think yeast gets into the tissues and keeps then burning, but i'm not a doctor. just my secret thoughts.

grassy

Posts : 52
Join date : 2011-07-04

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hey, I did this Empty Ok grassy, we have something in common!

Post  Rainy Day Sun Jul 22, 2012 10:09 pm

I also had a terrible reaction to my antiobiotic. I took Macrobid for my raging UTI. I had 3 terrible reactions: 1) My blood vessels all over my body hemoraged (petachaie), 2) my ankles became so sore I was limping everywhere for a few weeks, 3) my vaginal, butt, and leg area was burning all over. So, we have something in common...horrible reaction to antiobiotics.

Have you tried a major diet juicing cleanse to to try to rid yourself of all the toxins that a allergic reaction creates? I know some of this antiobiotic must still be bothering me since I still have some light petechaie spots...even though its been 6 months. Normally, petechaie go away in 2 months tops.

Have you tried stretching those muscles at all to try to rid any more of your remaining pain? I only am trying it cuz the butt pain went away...so maybe I was on to something there...

Rainy Day

Posts : 54
Join date : 2012-07-19
Location : US

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hey, I did this Empty Oh No!

Post  grassy Mon Jul 23, 2012 8:08 pm

Its not funny, but i'm giggling. We do have that in common. I got hives, and spots and they lasted two years, I became allergic to everything. Even things i used all my life. Like all soaps, deodorant, foods! almost anything. My skin burned all over my body,burned like our v does now. It gave me a horrific yeast. It messed up my internal organs. What a nightmare. My legs had cramps so bad I couldnt walk either. Hey, never take a sulfa antibiotic. NEVER. It would do you in. You know what? my secret opinion is that the antibiotic somehow Burned the v skins? or it was the yeast it caused? But finally on the interent somewhere i saw other people saying that antibiotics can attack skin and maybe ,just maybe, that did happen. Who knows? the medicines are dangerous these days. And the V skin would be the most delicate of all skin on the body. No i havent juiced or tried stretching. But i go to the chiro all the time, and he says he doesnt think its pn nerve. But he could be wrong too! Thats a good idea, maybe i ought to try stretching.

grassy

Posts : 52
Join date : 2011-07-04

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hey, I did this Empty spots

Post  Rainy Day Mon Jul 23, 2012 9:57 pm

Did they call your 'spots' petechaie too? I also had skin that was irrititated slightly all over my body. There were times I itched all over...times I tingled all over...etc. That has somewhat wore off though. I feel like the antiobiotic 'reset' my entire genetic make-up. I have also made an appt with a natural doctor that is well-known in this area for solving 'medical mysteries'. She will probably pack up her office and move after I come to visit her for some answers!

It is nice to know that you must have had yeast of some sort if Diflucan made a difference. That sort of helps me in my strategy for the next move...although I won't try diflucan right away. besides that, doctors don't want to help me, so they wouldn't prescrive it anyway!

For the exercises, I downloaded the Amy Stein book on pelvic pain. And, I googled some exercises off the internet. My butt pain was completely gone, although my toddler passed his flu on to me today...so I crapped water like 5 times in a row at work...so now I am so scared it will 'flare' things back there again!!! Smile

Did you get pain down your thighs too? That's the worst for me. The vaginal area isn't too bad except my pee hurts when it hits the sides...but I notice its always super acidic.

Rainy Day

Posts : 54
Join date : 2012-07-19
Location : US

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hey, I did this Empty rainyday?

Post  grassy Tue Jul 24, 2012 7:21 pm

I have a friend who is a microbiologist, You know, a real brainy smart one. I emailed her right away. She helped me alot. But I love the way you put that. It reset your entire body. Exactly! how I felt. Wow. No i didnt have those kind of spots, I had hives, all over. My skin burned all over. But the hives was something seperate. Two years my one eye would swell up, off an on. My inner stomach parts hurt. I had such a bad pain down my leg(on the antibiotics) . Worst pain i ever had. from the hip, right down to the foot. I went over to a site and looked up the pill. You ought to go over and look up the one you took. Macrobid? I'm going to go look at that one. ASKAPATIENT.COM. Its patient reviews of medicines. Very interesting. The pill I took was bactrim. Horrible reviews, I had every symptom of all the reviews. Even made me have intense panic. You know I have had antibiotics off and on thru life, for tooth things. Never, ever had problems. They are making them nasty these days.
Dont even know if i had yeast? no one would test for it. Lazy doctors. Diflucan, nah, thats a breeze. I was scared of it, but its not bad. Put off taking it for the longest time.

grassy

Posts : 52
Join date : 2011-07-04

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