Vulvodynia Support
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» Hope to all my suffering ladies
No pain during my period-Anyone else have this? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
No pain during my period-Anyone else have this? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
No pain during my period-Anyone else have this? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
No pain during my period-Anyone else have this? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
No pain during my period-Anyone else have this? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
No pain during my period-Anyone else have this? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
No pain during my period-Anyone else have this? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
No pain during my period-Anyone else have this? 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!
No pain during my period-Anyone else have this? 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


No pain during my period-Anyone else have this?

+2
Loulou
pepper7
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No pain during my period-Anyone else have this? Empty No pain during my period-Anyone else have this?

Post  pepper7 Wed Mar 14, 2012 11:24 pm

Hi,

So Iv noticed that the pain leading up to my period is bad, the week/10 days after my period is bad but the actual period itself? Heavenly pain free. Does anyone else have this?
Even today I wasn't using a tampon as I was quite light the pain/burning came back, then my period came on quite heavily and the burning disappeared......

Px

pepper7

Posts : 39
Join date : 2012-02-04
Location : UK

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Post  Loulou Thu Mar 15, 2012 4:18 pm

Hi pepper7

yes i've also noticed that my period is my most comfortable time. Dare I say, the time when everything feels normal! I've only had my VVD for 4 months but I noticed particularly with my last period it was very comfortable (apart from usual stomach cramps, backache, headache lol!) So I'm gonna pay close attention with my next period in a couple of weeks - if you'd told me 6 months ago that I would look forward to my period I would have rolled on the floor laughing!

I'm wondering what it means and i'm thinking:
- hormones? (i'm 47 so probably peri-menopausal though everything is still regular at mo) and so what would that mean for vvd treatment - a hormone cream??
- an underlying yeast infection that isn't showing up on cultures? (thrush usually subsides during a period I think) I've read about a condition called cytolitic vaginosis as a cause for vvd but my consultant poo-pooed it and said it was a made-up condition. But it does sound plausible when you read the stuff on the internet in which case treatment would be long-term oral anti-fungals (I think I read somewhere on this forum that this treatment has worked for someone)
-I've also been testing the acidity of my vagina (because my normal discharge seems to cause burning)- its between 3 and 4 which seems quite acidic to me (I think normal vaginal acidity is about 4.5?). So my period may be less acidic (can't test it cos the ph strips go on colour) and therefore less painful in terms of vvd. Don't know what treatment for that would be - special diet?? sodim bicarb baths?? (tried one of these and it didn't seem to make a difference but making a judgement after 1 try is perhaps a bit premature!)

Any of these ring bells or switch on light bulbs for you or anyone else here?
Lx

Loulou

Posts : 124
Join date : 2012-01-18

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Post  JemimaSurrender Thu Mar 15, 2012 4:42 pm

That's odd... I find that just before my period I'm at my very worst, then I'm slightly better (but still more sore than a "normal" week) during my actual period.

I guess everyone's different when it comes to this. I had my hormone levels tested last week and I was surprised to find they were all in the normal range for the first time since I've ever had them tested. I guess it rules out the hormonal route for me, but it might mean I can go back on the pill again some day so swings and roundabouts!

JemimaSurrender

Posts : 107
Join date : 2011-12-03
Age : 34
Location : Staffordshire, UK

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Post  ButterflyLiz Thu Mar 15, 2012 6:34 pm

Yes, me! It is bad leading and up to and after it but when I'm bleeding properly I feel almost normal (but then of course the stomach cramps take over!) My doc once said this is a sign of cyclical thrush & gave me fluconazole to take before & after my period for a couple of months, which helped at the time.

Loulou - I'm getting more and more convinced that I keep getting sub clinical yeast infections that don't show up on tests. I think there's definitely something in that.
ButterflyLiz
ButterflyLiz

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

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Post  Loulou Thu Mar 15, 2012 8:02 pm

The frustrating thing is that it seems the only way of really knowing if it is subclinical yeast is retrospectively i.e. you take long term anti-fungals or go on an anti-candida diet and then if the vvd disappears you can say 'aha I had a subclinical infection', rather than take a test to say 'you have a subclinical infection so you now need to do xyz'!! Aaaaarghhh!

Also I've read that over use of antifungals like fluconozole can lead to proliferation of more resistant and less common strains of candida (e.g. candida glabrata) - a bit like bacteria can develop resistance to some antibiotics. Don't know if the more resistant/less common strains are harder to test for or don't appear on the usual culture tests which might explain why some women have underlying infections which are not detected???? Anyone have any more detail about how the thrush tests work? (when I asked at my diagnosis consultation about which types of candida had been tested for my consultant just said that no candida had grown in the culture).


Loulou

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Post  Loulou Thu Mar 15, 2012 8:14 pm

Just realised I got my conditions mixed up in an earlier post here - I mentioned 'cytolitic vaginosis' when I meant to refer to candidaisis. Cytolitic vaginosis is not thrush related. Its about having too much good bacteria in the vagina - a separate topic. Sorry! Maybe the vvd has addled my brain too?!

Loulou

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Post  tammoth Fri Mar 16, 2012 6:38 am

I noticed this too. I was absolutely convinced my issue is hormone related or something but apparently am too young and full of estrogen. Maybe I should consider cyclic thrush? Though my doc prob won't let me

tammoth

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Join date : 2012-03-15

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Post  ButterflyLiz Sat Mar 17, 2012 10:10 am

Loulou – yep, like with everything else it seems to be trial & error! Though I am getting to know what it feels like now when it is thrush that is the problem.

I got the following about thrush tests from “The V Book” (not verbatim):

There are 2 tests for yeast; putting the swab on a slide and looking at it under the microscope to see if yeast cells are present. If hyphae are seen, it is c. albicans causing the problem. However if only spores are seen, this may imply that a non-albicans yeast is causing the problem, these are resistant to some therapies.

The more thorough test is to place the swab in a culture & see if any types of yeast grow. This takes a bit longer.

Microscopy is only about 40% accurate – shocking really, as docs seem to take yeast test results as gospel.

At my GPs, they just do the first type of test. With me, these have never come back positive. However, my consultant did a culture and it showed up loads of yeast. So basically, I don’t trust tests, I trust my instincts. If I take a diflucan and the flare dies down, it’s safe to say it was yeast, even if the test was negative.

I thought cyclic thrush was a fairly accepted thing amongst doctors – my consultant mentioned it to me & the V book talks about it as well:

“Oestrogen directly stimulates candida to switch from the yeast form that hangs out in the vagina, the spores, to the form that invades the vaginal cells and causes symptoms, the hyphae…The oestrogen-yeast relationship may also explain yeast infections that occur during the second half of the menstrual cycle…Yeast often flares up with the high oestrogen levels after ovulation, then backs off as menstruation begins and oestrogen levels have dropped to their lowest.”

I think sub-clincal infections are a bit more controversial? Although my consultant seemed to agree with the idea.

It’s ridiculous, docs think they have yeast all pinned down but they clearly don’t. The recent mouse study showed that repeated infections can cause long-term pain, for example, and nobody knew this till last September. A classic case of wanting to believe you know everything about a condition, when there’s clearly loads more left to uncover. As ever, we’re our own researchers.
ButterflyLiz
ButterflyLiz

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Age : 38
Location : UK

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Post  pepper7 Sun Mar 18, 2012 2:51 pm

Hi,

Wow! Im glad Im not the only one who has this I thought I was weird. Yeah Ive literally just stopped my period and the itching and burning has come back-I been doing perineum massages that have offered some relief.
I was wondering how many people take the pill? that may have an effect because it pretty much floods us with hormones.
I do agree its an acidity problem and an underlying yeast problem. Im on a wheat, dairy, sugar, yeast and corn free diet (as recommended by a nutritionist thanks to allergies and other health problems) Its tough but if it will help in the long run Ill do it.
Im waiting on a referral to a specialist where Im hoping I can really delve into all the whats and wherefores and get some proper answers.
I have started a little V diary-I write down what are the worst days and what are the easier days and im hoping to find a reoccurring thread in the symptoms.
Thanks Guys
Px

pepper7

Posts : 39
Join date : 2012-02-04
Location : UK

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Post  sadone Thu Mar 22, 2012 4:16 pm

I actually mentioned to my doctor (v specialist), that I felt better when I was bleeding heavily. She said that she has a number of patients like that- something about the vestibule being coated and soothed with the bleeding. How friggin weird! i get a bit of a flare up before it starts, and it is irritating to wear a pad when the bleeding is light. Grrrrrrrrrrrrrrrrrrrrrrrrrrrr!

sadone

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Post  tammoth Thu Mar 22, 2012 4:31 pm

That is exactly the same as me! Can't wait to get the damn pads off. I wonder whether it's partly hormonal though as well? Coz surely then water would make it feel better but it doesn't.

tammoth

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