Vulvodynia Support
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» Hope to all my suffering ladies
Feeling like the oddball.  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Feeling like the oddball.  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Feeling like the oddball.  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Feeling like the oddball.  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Feeling like the oddball.  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Feeling like the oddball.  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Feeling like the oddball.  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Feeling like the oddball.  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!
Feeling like the oddball.  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


Feeling like the oddball.

2 posters

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Feeling like the oddball.  Empty Feeling like the oddball.

Post  mmorgan Sun Sep 18, 2011 9:42 pm

I know the symptoms can vary but I feel like the oddball in this forum. cyclops

I do not have redness or external irritation.
I do not have the burning sensation during intercourse.
I've come across a picture that explains where to poke with a q-tip test and my burning isn't pictured on the image.

I burn along the sides of my vaginal wall as well as sometimes on my cervix.

I just wish I could connect with someone who experiences "my kind" of burning and maybe shed light on what treatments I should try. As most people say pelvic floor but I don't think that would cause me to burn where I'm burning. Sad

Vulvodynia is such a general term for the various types of vuvlar pain. I think it needs to be categorized to be more specific.
mmorgan
mmorgan

Posts : 65
Join date : 2011-07-14
Age : 35
Location : Texas

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Post  Sarah001 Mon Sep 19, 2011 5:38 pm

Do you know what you're describing doesn't really sound like it's your vulvar that's the problem, it sounds like it's vaginal which is a different circumstance. Has anyone checked your cervix? I've come across a few threads online where women have had a problem with the actual cervix and had vaginal burning rather than vulval burning, also has anyone checked you for endo? Your symptoms sound deeper than the vulvar which obviously wouldn't be "vulvo"-dynia. I could be mistaking what you're saying but does your vulvar hurt at all or is it in the vagina?
Sarah001
Sarah001

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

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Post  mmorgan Mon Sep 19, 2011 9:09 pm

When this first happened a spot above my urethral orifice burned but as time goes by it's starting to be more internal. I had a pap about a month ago and my results came back with "low grade abnormal cells". I'm not sure if that could be the cause of my burning cervix? I'm just so confused and of course doctors can not shed light as to the problem so I'm stuck trying to put the puzzle pieces together myself.

I've found that medical professionals just like to give medication without getting a sure diagnosis. The first gyno I went to said she didn't know why I was burning and she didn't see any redness, inflammation, or abrasions (I do have HSV1 I thought all this was due to a LONG active outbreak). She sent me on my way with a prescription of pyrium (for uti's which she did not test for nor could that of explained my burning). The last gyno said I had a yeast infection and sent me off with a prescription but didn't even care to look under a microscope to make sure that is what was going on. I mean while she was down there she said I didn't have much discharge. So I left that office $150 lighter and I refused to take the yeast medication without scientific proof which she could not provide.

I just made another appointment with another obgyn/gyno hopefully this one will listen to me besides coming off like a sales person trying to sale me things I don't need.
mmorgan
mmorgan

Posts : 65
Join date : 2011-07-14
Age : 35
Location : Texas

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Post  Sarah001 Tue Sep 20, 2011 7:18 pm

There's no harm in trying yeast medication but take the oral capsule rather than use creams, at least it rules yeast in or out. If the burning is internal only then it isn't vulvodynia as the vulva is the external genitals. There are a number of causes of internal burning so you need a full set of swabs doing plus a swab cultured to see what happens when they grow out the bacteria and basically go from there. Until you have the swabs done you can't really move forward because it may be a simple infection. If you can't get them done where you go next go to a GUM clinic and get them done there, GUM clinics aren't just for STDs they are for all manner of problems with that area of the body and they will be able to rule out all infections (or in if that's the case) plus refer you on to someone else if they can't help.

I've had abnormal cells before but no burning and I've never heard of anyone else having burning from them either but it doesn't mean there isn't something going on with the cervix if that's where you feel it. Some STDs affect the cervix but I'd have thought any gynae would have seen that if it was the case as it tends to be very visibly red. Get your swabs done first though, any way you can, and see what they show if anything.
Sarah001
Sarah001

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Age : 50
Location : UK

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Post  mmorgan Fri Sep 23, 2011 5:48 pm

Here I am a week before my period and the pain has seemed to almost stop. Does anyone else get these moments of relief before menstruation?

I have another gyno appointment October 3rd though I think it's just a consultation. Hopefully luck with this one.
mmorgan
mmorgan

Posts : 65
Join date : 2011-07-14
Age : 35
Location : Texas

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Post  Sarah001 Mon Sep 26, 2011 6:42 pm

I get less pain there just before my period and for the first day or two but with me I think it's more to do with my too lax ligaments getting looser and my brain is focused on the horrendous back pain I get instead!
Sarah001
Sarah001

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Location : UK

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