Vulvodynia Support
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» Hope to all my suffering ladies
I don't know what to do. Feel lost EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I don't know what to do. Feel lost EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I don't know what to do. Feel lost EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I don't know what to do. Feel lost EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I don't know what to do. Feel lost EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I don't know what to do. Feel lost EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I don't know what to do. Feel lost EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I don't know what to do. Feel lost 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 don't know what to do. Feel lost 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


I don't know what to do. Feel lost

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Post  sailor_moon Fri Dec 18, 2015 10:20 am

I hate my life!!! This condition has destroyed me. I feel as though I am on the verge of having a nervous breakdown...which I havn't done in a long time. I feel I am slipping back into the dark place I was a year and a half ago.Contemplating self-mutilation or some reckless act which may cost me my life or job.

I hate the fact that it has stopped me from achieving all my goals and dreams.

I can't change jobs because of this. I hate my job. I am miserable and get treated terribly and am on minimum wage...and on the wrong wage for the work I do. Nooone else will employ me because I need time off to see doctors, my current employers have threatened to fire me for being sick. I cannot leave as my husband does not earn big money and we have a mortgage.

This condition has ruined my chances of having a child, I only have 2 years left to be able to get fixed and conceive. I will not have a child if I am older than 30 and my husband won't either. Our personal choice please do not judge us. It is our decision for a damn good reason.

I have been heavily affected financially because of this...at least $40,000 in 2 and a half years, minimum. Another reason I cannot have a child, I cannot afford it. The stress of money really upsets me. I have always had money in the bank and been great with money management, now it's all gone on useless doctors and treatments that have not worked.

I have been seeing the same specialist for a year now and while he has found many other things wrong with me...PCOS, Endometriosis, hormone imbalance, and he did find candida once, I am still no better in the vulvodynia department!!! I don't know whether to start looking elsewhere for another doctor or not?

I have been taking Endep for a week and a half with very little difference. Legit don't think it is doing anything besides make me feel even more fatigued.

I keep wanting to try steroid injections/ nerve block but my doctor says "no its too early for that! How is almost 3 years too fucking early?! Biopsies showed non specific inflammation in that area...steroids are an anti-inflammatory....creams do nothing as it is under my skin not above it. Especially coz I show signs of pudental neuralgia and a nerve block will diagnose it. I get red raw patches down there...I hate the appearance of it....I used to be a nice tidy package down there now I have awful red patches that itch and burn with biopsies only showing inflammation. WHY WHY WHY!!!!!!! I feel disgusting.

I have seen 15 doctors at least in 2 and a half years. I have not even came close to semi-successful treatment. nothing helps at all.

All my doctor wants to do is get me to have a baby. No way. There is no guarantee I won't end up worse!

I have given up on asking family for support. They just think that because I don't bitch and cry about it to them every single day that "I must be going ok!". No, i'm fucking not, but there is no point discussing it or looking for sympathy because noone understands how I feel anyway.

I am contemplating looking into surgery but I am unprovoked itch and burn, not provoked so apparantly it won't work.


Are there any members or other more active forums elsewhere? i can't use Facebook groups due to a chance of some horrible people I'm forced to associate with hacking my account and spreading the word. I really need to find more support before I go insane.
sailor_moon
sailor_moon

Posts : 222
Join date : 2014-07-06
Location : Australia

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Post  WaahwaahUK Fri Dec 18, 2015 7:49 pm

I just want to say that I hear you, and I truly hope you find some real relief soon. It's a terribly isolating condition. I can't offer much in the way of help, but wanted to say I hear your pain.

WaahwaahUK

Posts : 117
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Post  PainBlogger Fri Dec 18, 2015 9:36 pm

This condition is bad enough purely from a pain perspective without the added worries of all the knock on effects it causes Sad

Do you have access to any kind of counselling/psychotherapy services where you live? It can be helpful to talk things through with a neutral party. Whilst they won't understand exactly what you're going through unless they've been through it or similar issues themselves, they may be able to help you look at things from a different angle and offer some coping mechanisms. If you can find a professional of that ilk who has experience with pain management then all the better.

I have a lot of the same issues as you mention as far as how chronic pain is impacting on my life choices. I also have chronic neuropathic pain in about 80% of my body so not just the vulvodynia. I benefitted a lot from going through the pain service at my local hospital. One of the key things I learnt was to set goals that I can achieve despite my current circumstances. Obviously that doesn't directly help me to do those things that my pain stops me from doing (working, having financial security, having kids), but having realistic goals in the meantime has helped my morale - and getting into a better place mentally has probably had a knock on effect on my pain levels in that my lowered stress levels means lowered pain perception.

I haven't found any more active forums than this really for vulvodynia, although the ic network forum, which is quite active re: bladder issues, has a section for vulvodynia (http://www.ic-network.com/forum/forum.php - in other related conditions near the bottom of the page).

I hope things improve for you.

PainBlogger

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Join date : 2015-07-27

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Post  sarisbaris Thu Dec 31, 2015 6:04 am

Please read my post in the 'vulvodynia info' forum titled 'cured from vulvodynia...' This is not a joke. I've been pain free for over 2 years now. And yes it's time to find a new doctor. If they haven't fixed it by now, just assume they don't know how. So you'll need to be brave and try something new. And you're right that pregnancy doesn't help vulvodynia... Mine flared up 2 months prego. But at least that pushed me to find the right doctor who fixed finally.

sarisbaris

Posts : 69
Join date : 2014-02-17

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Post  sailor_moon Mon Jan 18, 2016 8:31 pm

Thanks heaps ladies. My doctor ended up sending me for MRI scans of the full spine and neck, as he said it could be to do with my back. I know a few people who have had their back be the cause of their vulvodynia.

I thought over the past 2 weeks ami may be helping with the unprovoked itch, but I had sex 2 days ago and I am so raw and sore! And my right vestibule is red! don't know how that can possibly be to do with my back.

I get sciatica/neuralgia down 1 side of my body really bad and my back is bad too....

just have to wait and see what happens in the meantime and hope that something shows.

sailor_moon
sailor_moon

Posts : 222
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