Vulvodynia Support
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» Hope to all my suffering ladies
My Story and My Questions EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
My Story and My Questions EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
My Story and My Questions EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
My Story and My Questions EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
My Story and My Questions EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
My Story and My Questions EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
My Story and My Questions EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
My Story and My Questions 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!
My Story and My Questions 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


My Story and My Questions

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My Story and My Questions Empty My Story and My Questions

Post  junobug85 Sun Apr 22, 2012 11:43 pm

After 4 months of being sexually active with my boyfriend I got my first UTI, followed by my first yeast infection, follow by my first bacterial vaginosis infection, and from that day on I never felt any better... I constantly thought I had a yeast and bladder infection was prescribed diflucan over and over again and popped Uristat like candy. I thought I had herpes or gonorrhea but after dozens of OBGYN's telling me there was nothing wrong with me, my boyfriend was probably well endowed, I eating poorly, not exercising enough or my pants were too tight, I saw a Uro-gynecologist who told me it sounded like I had vulvadynia. This was the best news of my life to find out that someone believed me and that there was help and I wasn't crazy. I saw Dr. Schulze in north NJ who was amazing and for the past 4 months, I have religiously been on a low oxidant diet (which is challenging!), I take xanex, perideum, and use estrogen cream. All these treatments have helped significantly, but I still have soreness, sting, pain and bladder infection symptoms. I am considering the surgery, but Dr. Schulze does not take my insurance so I need to look into other doctors. My first question is does any one have any recommendations because I can't find any other doctors that even believe in this condition. My second question is what are my chances of the surgery not working? I have had vulvadynia for 5 years now and I have read that the longer you wait, the more chance you have of the surgery not working.

junobug85

Posts : 14
Join date : 2012-04-22

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My Story and My Questions Empty Re: My Story and My Questions

Post  LizLemonny Sun Apr 29, 2012 8:53 am

Why are the doctors still so ignorant even specialists - it is well documented now. I remember all those diagnoses from 1985-90 when I was trying to find out what was wrong with me. Do you have the pain constantly (vulvodynia) or just during and after intercourse or friction such as running (vestibulodynia).

LizLemonny

Posts : 14
Join date : 2012-04-14

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My Story and My Questions Empty Re: My Story and My Questions

Post  junobug85 Mon Apr 30, 2012 12:26 am

thank you for responding! This past November my symptoms seemed to be around the clock, but with the estrogen cream and xanex the pain and discomfort comes and goes and is usually triggered by friction. I have found some doctors in my area that take my insurance and believe in vulvadynia so I am very hopeful.

junobug85

Posts : 14
Join date : 2012-04-22

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My Story and My Questions Empty Re: My Story and My Questions

Post  LizLemonny Thu May 10, 2012 4:12 pm

Yes - once it is triggered it does take a while to settle down. It makes sense to use the creams before going for walks and certainly before sex, so that you don't get this problem or you lessen it as much as possible. It sometimes feels to me as though the pain creates more pain. Lidocaine is good. I haven't tried estrogen but I have been thinking of trying it.

LizLemonny

Posts : 14
Join date : 2012-04-14

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My Story and My Questions Empty Re: My Story and My Questions

Post  junobug85 Thu May 10, 2012 5:29 pm

I feel like I constantly am swollen and have an infection. The glands around my bladder feel swollen as well and make me feel like I constantly have to pee. It is challenging to fall asleep and I wake up a lot during the night feeling like I am going to wet the bed. It is really depressing... I just want to feel normal Sad My other problem is is that when my symptoms really flair up, I feel it in all parts of my private area, not only my vestibular glands, like a fire..... it burns a lot. Sometimes I test for Yeast Infections and I have tested for BV 3 times in 5 years, but most of the time I do not have an infection. When this happens, the creams, xanax and peridium do not really help. I just ordered folic acid and coconut oil tablets because one person in this blog said they help.

junobug85

Posts : 14
Join date : 2012-04-22

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