Vulvodynia Support
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Latest topics
» Hope to all my suffering ladies
suffering in silence? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
suffering in silence? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
suffering in silence? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
suffering in silence? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
suffering in silence? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
suffering in silence? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
suffering in silence? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
suffering in silence? 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!
suffering in silence? 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


suffering in silence?

5 posters

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suffering in silence? Empty suffering in silence?

Post  missnik1 Mon Jan 09, 2012 8:59 pm

i feel like ive been suffering in silence for the past couple of years. i have trouble opening up about my issues..my moods definitely reflect my pain though. but no one around me seems to understand because they dont know what im struggling with on a daily basis. i could use some support from others in my same situation, i just turned 23 have had vulvodynia for past 2 years. im also in a long term relationship that is heading south fast thanks to the detrimental effects of this frustrting disorder! i need something to be hopeful about , to look forwrd to, new hope i guess. ive tried seveeral treatments with no relief and im sick and tired of making doctor appointment aftr apointment. i dont have the best of insurances (just state). so i feel like im not getting the best of care either. like my problems are getting brushed aside. i need tips on how to find a good doctor and how to make the most out of my appointments. i get anxious beforehand and feel like i leave a lot of things out during our discussion. and just leave there not feeling any better about myself. how do i open up and make it sound as serious as it really is? i want the doctor to understand my concerns and my pain.

missnik1

Posts : 2
Join date : 2012-01-09
Location : Oregon

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Post  Sarah001 Tue Jan 10, 2012 7:56 pm

Write it down if you forget stuff then you have the paper as a reminder and a distraction to look at if you struggle to open up. I can't help with the insurance issues becuase I'm in the UK so I don't fully understand it but don't let them fob you off, write it down so you get everything out in the appointment.
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

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Post  ButterflyLiz Wed Jan 11, 2012 8:06 pm

I second Sarah’s suggestion; I get nervous & forget things too and taking along notes for the doctor is a brilliant way to get around this. If you look at my post on another thread here: http://www.vulvodyniasupportforum.com/t648-my-belated-story you can see the layout I use. I take two copies along to appointments; one to refer to myself and one the doctor can keep in my file. Don’t be afraid to include the psychological impact this condition has had on you. I hope reading around the forum has helped you to feel less alone. There are lots of us out there! x
ButterflyLiz
ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 38
Location : UK

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Post  unga Fri Feb 17, 2012 1:48 am

hello, I totally understand what you're feeling, after 3 years I have just found a doctor who is understanding and exploring various treatment methods with me. This happened because I pretty much had a breakdown at the reception of the doctors surgery and the receptionist who had seen me there often told me there was a new doctor at the surgery who she thought would be hepful, and she was...this was a stroke of luck, but it shows that they do happen. My advice to you, as some other people have said, is write everything down and then make sure you say it, it's easy to get distracted or to belittle your experience... do not do this, this is a serious situation that affects all facets of your life...tell them everything that has been affected. I hesitate to write this but I have found male doctors to be unhelpful (this is only my experience I am not at all suggesting that a male doctor could not be helpful; sadly one of the ones I saw insinuated that I didn't know how to have intercourse properly, if I wasn't so offended and embarrassed I probably would have punched him), and the most helpful doctors have been young women. I think just being calm and making sure you say everything you want to say is important. best of luck to you Xx

unga

Posts : 2
Join date : 2012-02-17

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Post  noni Fri Feb 17, 2012 3:13 am

Hey Miss!

Your dark feelings are normal with this condition. We've all been there.

Have a look around and read about us. We're like sisters on here.

*hugs*
noni
noni

Posts : 242
Join date : 2011-01-10
Age : 36
Location : Ontario

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