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» 7 months since the diagnosis
Social Security Disability Benefits EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Social Security Disability Benefits EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Social Security Disability Benefits EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Social Security Disability Benefits 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!
Social Security Disability Benefits EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Social Security Disability Benefits EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Social Security Disability Benefits EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Social Security Disability Benefits EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Social Security Disability Benefits EmptyMon Apr 08, 2019 7:54 am by Jo44

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


Social Security Disability Benefits

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Social Security Disability Benefits Empty Social Security Disability Benefits

Post  SinclairSassy on Fri May 19, 2017 8:50 pm

Hello!

Is there anyone out there who has successfully applied for and received social security disability benefits because they have vulvodynia? My dad told me I should apply since I am unable to sit for long periods and also because I am in pain a lot of the time (due to the vulvodynia). I also have sacroiliac joint dysfunction and a herniated disc in my back, but the vulvodynia is by far the most problematic for me as far as sitting. The back problems can be helped with epidurals and injections - both of which eventually wear off and have to be repeated, but they do help the pain in my back. Oh! Forgot to mention that I have interstitial cystitis, too. A regular party going on in my body. NOT.

SinclairSassy

Posts : 27
Join date : 2016-08-02
Location : Huntsville, AL

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Post  Hopeitworks on Sat Sep 02, 2017 6:18 pm

I would like to know the answer to this question as well if anyone knows????

Hopeitworks

Posts : 36
Join date : 2017-08-01
Location : United States

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Post  SinclairSassy on Tue May 22, 2018 7:22 pm

Again, I guess the answer is no. If it weren't for my husband supporting me, and God knows why he even stays with me. I would be dead. Either from starvation because I cannot work or some other means.

How many women truly have this disease? Why does no one know about it? I went to a psychiatrist who works with patients who have chronic diseases and she had never heard of this one. I feel like a damn freak.

And how do I explain to my dad and my husband that I can not get disability?

I am so sorry that I am in a dark place right now, but seriously, I could really use some educated, compassionate professional help. Not that deer in the headlights look when I mention my disease.So frustrated.

SinclairSassy

Posts : 27
Join date : 2016-08-02
Location : Huntsville, AL

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