Vulvodynia Support
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» Hope to all my suffering ladies
New here, diagnosed 2 years ago EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New here, diagnosed 2 years ago EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New here, diagnosed 2 years ago EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New here, diagnosed 2 years ago EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New here, diagnosed 2 years ago EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New here, diagnosed 2 years ago EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New here, diagnosed 2 years ago EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New here, diagnosed 2 years ago 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!
New here, diagnosed 2 years ago 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


New here, diagnosed 2 years ago

4 posters

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New here, diagnosed 2 years ago Empty New here, diagnosed 2 years ago

Post  mythreesons Wed Jul 30, 2014 8:17 pm

I'm Teri from Alberta, Canada. I was diagnosed with Vulvodynia 2 years ago after 2 months of terrible burning pain that doctors could find no reason for. I started taking Elavil (30 mg per day) and Vagifem 2 times/week. That kept symptoms mostly under control for almost 2 full years. About 6 weeks ago, I started my first major flare-up for reasons unknown and can't seem to get it under control again. My doctor is very uneducated on this condition and I'm in the process of trying to find a new doctor.

I'm trying to follow the low oxalate diet, but have found conflicting info on it. Some sites list certain foods that are okay while other sites say to avoid. How do I know which list to follow? I've also been taking calcium citrate for about 3 weeks (1200 mg per day). I've had some improvement since the start of this flare-up, but I'm a very long way from total relief. Some days are much worse than others. I'm feeling very lost.

mythreesons

Posts : 4
Join date : 2014-07-30

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Post  zarli Thu Jul 31, 2014 6:13 am

It is so hard and understandable that you are feeling lost. You have been going through this for2 years. Keep researching doctors in your area you will find one that helps it can be along process. It is great that something worked for 2 years that means something will work again you might need your meds updated. Kind thoughts sent your way

zarli

Posts : 182
Join date : 2013-08-11
Location : Australia

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Post  Alana3 Thu Jul 31, 2014 1:08 pm

I am not sure about the oxalate diet.  But there is a website solely for the purpose of vulvodynia.  (vulvodynia.com I think) I would go with what they say! Low to NO sugar, no yeast, it's pretty much a gluten free diet.  I couldn't do it I love food too much!  Maybe you should do a cleanse and then slowly add food back in your diet and see what effects you!

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  sailor_moon Thu Jul 31, 2014 9:44 pm

You poor thing! Needless to say you have come to the right place being on here. All the girls are amazing and very informative too Smile

How old are you? What tests and investigations have the doctors actually done on you?
sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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Post  mythreesons Sat Aug 02, 2014 12:54 am

Thank you. I am 45. Honestly, nothing has been done since I first started suffering 2 years ago. At that time, my doctor checked my hormone levels, tested me for STD's, yeast and BV. Despite testing negative for yeast, I was put on Fluconazole for a month, which did nothing. My doctor then gave me a steroid cream thinking perhaps I had lichen sclerosis (despite the fact my vulva did not appear as it would if I had this). Didn't help. After everything else failed, I was diagnosed as having vulvodynia. Like I said, treatment worked for 2 years so I've done no further investigating into finding a cause for my symptoms (if a cause can ever be found).

mythreesons

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Post  sailor_moon Sat Aug 02, 2014 1:04 am

Is your doctor a specialist? A Gynecologist or Vulva specialist? If not you need to find a different doctor who knows what they are doing.

Now, I know what it is like to deal with incompetent doctors, I am seeing a new doctor in 3 days time and I have done my research with hormones! A basic blood test will NOT show a hormone imbalance most of the time. You need to get a special 24hour urine test, saliva test and special blood tests done. I will be asking this new doctor to do this for me because I believe my problem is hormonal.

Have you had a biopsy done? They are nowhere near as bad as people say, I have had 2 done and you literally can not tell where they got done! If you do have lichen sclerosis a biopsy will confirm it.

I have been like this for a year and a half, this new doctor will be doctor number 12! I will not give up until I find a cure for myself!

Do you have any other symptoms? Or are you totally healthy otherwise?
sailor_moon
sailor_moon

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