Vulvodynia Support
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» Hope to all my suffering ladies
I want an exchange...my vagina doesn't work properly :( EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I want an exchange...my vagina doesn't work properly :( EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I want an exchange...my vagina doesn't work properly :( EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I want an exchange...my vagina doesn't work properly :( EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I want an exchange...my vagina doesn't work properly :( EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I want an exchange...my vagina doesn't work properly :( EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I want an exchange...my vagina doesn't work properly :( EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I want an exchange...my vagina doesn't work properly :( 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!
I want an exchange...my vagina doesn't work properly :( 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.

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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 …

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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- …

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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 …

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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 …

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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 …

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I want an exchange...my vagina doesn't work properly :(

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Post  naomi Fri Apr 09, 2010 11:40 pm

Wow I came across this website on the daily mail website.

Hello all!

Last year I wrote my story down on a site I found so I shall copy and paste the link now....

http://www.experienceproject.com/stories/Have-Vulvar-Vestibulitis-Syndrome/660437

I've seen 7 specialists, all privately to get to the bottom of this (excuse the pun) with no answers....just constant soreness daily. My vagina internally has acute inflammation and creates a hell of a lot of discomfort 24/7.

Sex is out of the question. I tried to test the waters recently with a vibrator...It bleed and I had no such luck. Sex is a distant memory and the thought of it just makes me shudder unforch' for my partner.

I lost my job in Jan this year and have been on employment support allowance. I had a medical assessment recently....I FAILED!!! (even though I took all of my paperwork with me from professors and consultants) So now I am having to appeal and go to an independent tribunal. It sucks. Id do anything to get back to a normal working life...like everyone else I know. DECISION TURNED ROUND AT TRIBUNAL 29/07/10 Smile Smile

It makes me feel so resentful towards people....friends, family. They are getting on with life and I am stuck in a constant nightmare. I am not a nasty person either so to feel these feelings just fills me with guilt.

I see a lady once a week privately, shes a pychiatrist/counsellor/something else I cant spell!....shes lovely and out of all the specialists I have seen across the UK she really does care about me. I was so anxious about my condition, I still am now and it has turned into clinical depression, horrible horrible horrible. I wish with all my heart it would disappear. Its such an isolating condition and it makes me lonely and feel like a freak...not a 'real' or /proper' woman.

Do folk like in the UK on this site???...Im based in Cheltenham, Gloucestershire. It would be lovely to meet up with people. I went to a Vulval Pain workshop in Shrewsbury last year, But everyone seemed to suffer with the stabbing pain type of vulvodynia. Mine is raw, inflammed and so so sore. More like Desquimative Inflammatory Vagintis....man I could retrain as a gynae after my years of research! so sad! Crying or Very sad

I am looking into trying Marjorie Crandalls theory about yeast spores burrowing into the vaginal/vulval walls...topical treatments do not reach the blighters there...hence no treatment that works. it needs to be through long term antifungal tablets and treatment through a 10 step programme. I started it last year but the UK medical profession do not agree with her theory. Also the antifungals caused such dry skin and half my hair fell out (luckily I had a thick mop of hair)

Well I am shattered so off to bed. I will write more v soon and waffle on again no doubt.

Hopefully speak to you soon people!

Naomi
xxxx


Last edited by naomi on Wed Aug 04, 2010 5:26 pm; edited 1 time in total
naomi
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Post  Sebby (Admin) Sun Apr 11, 2010 12:30 pm

Hi Naomi,

Thank you so much for sharing your story, im 29 and have not been in a relationship for over a year now as the problems I have had with intercourse hurting just made me think whats the point. I too wish I can one day have a baby but it seems like such a distant dream and I can hear my biological clock ticking relentlessly!

I also had many years in my early 20's with what I thought was recurrent thrush, Im not really sure as I just used to get the symptoms buy the cream and it would clear up. I had been tested for STI's and came back negative. Then about a year and half ago It got worse and no antifungal medications worked, the dr tested me several times but I had no yeast infections.

After recurrent and then constant soreness, rawness, itching, burning you name it, I found out about Vulvodynia on the web. I find that my main symptom is a soreness and rawness around the vulva area and only get the stabbing pain sometimes.

I have been to gynea's, dermo's, gp's etc but most either said it was in my head or just didnt know what to do!

I have recently been seeing a gynea at my local hosp who is much more understanding and is trying me on the pill as I havnt taken it since I was a teenager and I also had problems with my periods.

I am finding a slight reduction in the pain but have only been on it for a month and a half. If this doesnt work then he will refer me to a specialist vulva clinic. He said there was one in the hospital. I didnt even know that! I dont know why they just didnt refer me there anyway!

Have you read Dr Glazer's book on Vulvodynia? there is lots of info on possible treatments. I live in the uk (London) and might try to find out if they have any bio-feedback practioners over here. I have thought I may as well try the bio-feedback, but I dont really know the cause of mine and if it does have anything to do with my pelvic floor muscles???

I have not heard about Majorie Crandell's theory I will look that up but I cant take the risk my my hair falling out its so fine anyway!!

Keep in touch and hopefully by sharing stories and treatments we can all begin to heal and build our lives up again.

Sebby (Admin)
xxx
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Post  Grace Thu Jun 17, 2010 12:26 am

The symptoms you were describing sound a lot like what I suffered with for years before I got a true diagnosis of Vulvar Vestibulitis. Check this out on the internet and come back here to talk to me.

Grace

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Post  Sarah001 Thu Jun 17, 2010 7:10 pm

Vulvar Vestibulitis is just a subset of vulvodynia though, it still only means "pain/inflammation in the vestibule" just as vulvodynia means "pain in the vulva", it's only a diagnosis of symptoms, it doesn't explain why it's there or how to get rid of it.
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Post  naomi Sat Jun 19, 2010 8:54 pm

whatever I have...all I know is that its taken over my life. Taken my job, happiness and gradually cracking into my relationship. Why can these doctors take control and support me??? all the researching I have done myself. My parents hve spend 10k of their inheritance last yr alone...still no answers. And yet the medical profession just pass the buck on and on. It sucks. Please someone give me a hug too
Sad

I dont know how much more I can take I want my life back
naomi
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Post  tweety Sun Jun 20, 2010 2:49 am

Hi Naomi,

Unfortunately, this is one of those medical problems that don't have a one simple cure... I don't think life is ever the same after you go through this. You can only hope that life gets better...

This is where focussing on on things that make you happy will somewhat balance out the rest of the unhapiness you feel. I know it's hard but I think that's the approach I'm going to have to take too. I've got to find something new that doesn't upset me. So what do you love doing that doesn't aggravate you too much?

*hugz*

Sue

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Post  Sarah001 Sun Jun 20, 2010 11:34 am

Naomi have you had a biopsy done on your sore skin? The reason I ask is because in order to rule everything out if sore skin is present a referral to a vulvar dermatologist is necessary. As you're in the UK you can get this through the NHS but rather than ask a GP for it who will refer you to a dermatology department in general the best way to get to see one is to get another consultant to refer you. Consultants can refer you to a particular consultant and not just to a general department. I've got a referral to see one in August and I managed to get it by seeing a GU consultant. Any of the consultants you see can do this and the GU doctor I saw said it should always be a vulvar dermatologist rather than a general one as the general ones don't know enough about vulvar skin problems to be of help. There are several in the UK so there's bound to be one somewhere near you even if it's only once a month.

There are also vulvar clinics that we can go to, the nearest one to me is Sheffield apparently which is several hours away but the GU doctor said if dermatology didn't have any answers that's where I should try next as again they know things about vulvar problems that other doctors don't.
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Post  naomi Tue Jun 22, 2010 5:56 pm

Hi tweety,

Sorry for late reply, sometimes I cant even get the laptop out as i get so low.... ridiculous!

I got a bunny rabbit last september (see profile pic!) a.k.a Bob. Reason being, my therapist asked me what makes me feel happy? I said animals and children, but it makes me sad seeing kids as it upsets me that i cant start a family.

So I got up a few mornings after my session and went and got Bob! Hes lush! Living back at my folks with me at the mo as I get so lonely and low at the place I rent.
The only thing is when Im as low as I have been this week I cant even get out and fed him, luckily my folks deal with all that. He spends 18 hours out of his hutch everyday and mooches round the garden and house...oh the life of a bunny rabbit!! He def does take my mind off things sometimes.

I miss swimming sooo much (chlorine makes me hit the roof and howl) but im hoping the sea water in turkey might soothe me....watch this space if you hear my howl from far away!

I started a pottery course in April and managed 3 sessions....now Ive missed so many i cant go back. waste of money but Its such a struggle to attend when I have no enthusiasm.

I do do painting though when I am feeling up to it...see my facebook albums!! I sell them too but thats on the back burner for the moment. I paint abstract art with glitters, glues, acrylic inks etc.


Sarah,

I had biopsies done last sept, internal ones, showed Acute Inflammatory Vaginits....aka....friggin sore La-la! different treatments that the professor of gynae didnt work. That is why he referred me to a hospital in Oxford. Now I am waiting til the end of July to have more biopsies taken (internal and external) but a new gynae. It is a joint clinic with a consultant dermatologist with an interest in vulval conditions, and a gynae. Hopefully they might come up with something. But from all my research over the months it appears to me it is Vulval vestibulitis, not that im an expert! Smile

Sorry if I dont reply straight away I really struggle with this at times, and this is one of them!

Hope everyone is ok

love Nai xxxxxxxxxxxxxxx

naomi
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Post  naomi Tue Apr 21, 2015 11:50 pm

Gosh it's upsetting reading through my old posts
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Post  martinifaerie Tue May 05, 2015 9:30 pm

How are you doing now Naomi? I have just read through all these and really feel for you and all you have been through. It has also made me realise mine could be so much worse. I dont get pain all the time, only through intercourse, but to me that is bad enough! I now see the other ways it can effect women and how it can really impact on daily life. I hope you have had some progress and feel a bit better in yourself. A place like this is so good to find other to chat to and see what works for everyone and opens up other options for you. I am still very new to the site so making my way around to see what its all about, but so far everyone seems so supportive and helpful. I already feel a little better about it knowing you are all here.
xxx

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Post  naomi Sat May 09, 2015 7:24 pm

Hello! Yes I'm good thank you! No progression with my health stuff but I have recently started a more holistic approach to my condition. Healthy eating (until last night when I went to see The Prodigy in Cardiff and drank a vat load of red wine - man I was so ill!!). I have started taking supplements too and trying out guided meditation videos on YouTube
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