Vulvodynia Support
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» Hope to all my suffering ladies
My story - please someone help EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
My story - please someone help EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
My story - please someone help EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
My story - please someone help EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
My story - please someone help EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
My story - please someone help EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
My story - please someone help EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
My story - please someone help 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 - please someone help 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 - please someone help

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Post  Roo Tue May 21, 2013 8:11 pm

Hi,

I have been married for 3 years to a wonderful husband but during all that time we have not been able to have a sexual relationship.
From the first time we tried I felt pain and panicky.
After getting some urine infections and thrush my fear became worse and on top of this I feel pain even when a small amount of pressure is put on the entrance of the vagina.
I have tried lubricants (which sting) and dilators. I struggle to put anything inside due to fear and pain.
On rare occasions when we have got so far with intercourse the pain is so intense I can't go any further.
I have been to the doctor and to a sex therapist which didn't help me.
I am really not sure what to do - does anyone have advice??

Roo

Posts : 1
Join date : 2013-05-06
Location : UK

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Post  dreaming@jeans Mon Jun 03, 2013 5:26 am

I am so sorry to hear about how painful it has been for you. I don't know your age and what you have tried but i have been able to find some relief after 24 years of this living hell. I have a list of problems longer than my arm but this awful pain given to us women just plain sucks more than anything else in my life. I have not been intimate with my husband for 1 year and I miss him so much. You must have a special partner that is no doubt as frustrated as you deep down. I got on hormones years ago after going to many doctors and trying everything (without luck). I know that testosterone was instantly helpful but it is not a long term thing since it can level out. You have to see a compounding specialist for special hormones (creams). I use what's called the Wiley Protocol which I'm sure has a website. A doctor developed it and it is hormone cream. Your vagina is dry and hurting which is similar to going through menopause. I have to pay cash for it since it is compounded by a special pharmacy and not covered by insurance. If you want more info I can help you. I use estrogen and progesterone and they also make testosterone (gave me sex back for a while). I am sorry for your pain. I am sitting here in excruciating pain myself for some reason. I either wore something too tight or ate too many cookies yesterday. I am starting to think there is a connection with the sugar and yeast. This is my very first post btw. I just had to reach out to you. Hope today is better. Sincerely, Julie

dreaming@jeans

Posts : 3
Join date : 2013-06-03
Age : 52
Location : santa cruz, california

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Post  jen007 Mon Jun 03, 2013 11:46 pm

Hello Roo,

I'm sorry to hear about the pain you're feeling. Vulvodynia (VV) is truly a curse. I'm young, but I've tried a lot of things to help ease my pain. Theres a couple of things you can change in your daily routines that may be able to give you some relief. One thing you can try is changing your underwear to 100% cotton. The cotton helps keep moisture away from your "area" keeping it vented. This helps keep the yeast away. Second, you could use un-scented soaps on your "area". I found that using un-scented ivory soap is less irritating on my skin. Most of the time women with VV have delicate/ sensitive skin "down there" and soaps with perfumes can be harsh and cause pain. Third, you can freeze a bottle of water and put it between your legs. I used this when I would get the burning feeling. A water bottle works better than an ice pack because it fits perfectly between the legs, especially a small soda bottle. Fourth, you MUST find a specialist. It's rare that a regular gyno knows anything about VV. I went to about 5 doctors before I found the right one. I can be hard to find a specialist in certain parts of the country, or even globally. I'd recommend going to the NVA (National Vulvodynia Association) website and join. Once you're a member you can get a list of recommended doctors in your area that specialize in VV.

I hope I was of some help! I know how hard it is to find information about this. Don't give up!

-Jen

jen007

Posts : 152
Join date : 2012-11-05
Age : 31
Location : U.S.A

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Post  maria1985 Wed Jun 05, 2013 4:12 pm

Hi,
You mentioned you have had some urinary infection for which i suppose you have been treated with antibiotics.. Sexual intercourse is also painfull...I have been there. They discovered I had Candida in my urethra and bladder and that caused the pain I was getting and just like you sex was painfull..Candida can cause inflamation in the vagina and that makes sex almost unbearable.

The interesting thing here is that alot of women have previously had a UTI before experience "vulvodynia". Its a strong link between antibiotics and thrush taking over causing most symptoms women are complaining here (painfull sex, pain increasing before and during period when obv acidity of vagina drops making thrush fluorish, pain when sitting down etc etc). Candida is the most common but a couple other not so much and hard to find and treat. Talk to your GP's about the eventuality of having a systemic candida or bladder candiasis.. They can take a swab and check it and so you will know.

Hope this helps

maria1985

Posts : 14
Join date : 2012-10-18
Location : Leeds, UK

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Post  Marylynnreily Thu Jun 06, 2013 9:24 am

Maria..I know many women on here will say that their vulvodynia has nothing to do with an actual infection, i was diagnosed for years with vulvodynia and it turned out to be a long term chronic infection for me...

Please try to find a gynecologist and try some clindesse for atleast 14 days for awhile, just to see if your problem is maybe bacterial, and then try the Gyne Lotrimin 3 day, atleast 3 packages (if you can find it in the stores where you live, its hard to find) if not, its worth it to order it online, you can get it online, and it is cheap..cheaper than Monistat..

Not all yeast creams are created equal! Monistat doesnt even work, for many people..

I know its a long shot, but its worth it to try..I had tried everything before discovering these things after MANY years, prayers, tears to God, and a broken marriage later..
Marylynnreily
Marylynnreily

Posts : 27
Join date : 2013-05-21

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