Vulvodynia Support
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» Hope to all my suffering ladies
Vulvodynia research help EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Vulvodynia research help EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Vulvodynia research help EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Vulvodynia research help EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Vulvodynia research help EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Vulvodynia research help EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Vulvodynia research help EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Vulvodynia research help 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!
Vulvodynia research help 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


Vulvodynia research help

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Post  janebowering Tue May 13, 2014 1:59 am

Hello ladies,

My name is Jane Bowering and I am a PhD student at the University of South Australia. I am working in the Body in Mind research group (I am unable to post the link to our website but it is www DOT bodyinmind DOT org) looking at the role of the brain in vulvodynia. One of my research projects is to look at developing a tool to assess the impact of pain on the lives of women suffering from vulvodynia and other pelvic pain conditions. I was wondering whether some of you might be able to help me.

In creating this questionnaire (which will have several rounds of testing and refining to make sure it is reliable and valid), I need to know a broad overview of what women with pelvic pain suffer. I have a usual list of suspects: sitting, wearing pants, wearing tight fitting clothes, wearing underwear, using tampons, and having sex. But this is where I need your input!

Can you tell me what other activities are altered in your life because of your vulvodynia? Are there certain things you do differently or avoid altogether because of the pain?

I will hopefully post the link of the questionnaire in its early stages for any of you interested in using it with your doctors, gynaes, etc. It will be a very useful tool to assess the impact of pelvic pain on women's lives once it is complete.

Thanks a million for helping me out. If you have any questions feel free to shoot me an email - jane.bowering AT mymail.unisa.edu.au.

Jane Smile
janebowering
janebowering

Posts : 2
Join date : 2014-05-13
Age : 33
Location : Adelaide

http://bodyinmind.org

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Post  zarli Tue May 13, 2014 3:15 am

Yes how wonderful to hear that there is research happening. Vulva pain in the form of neuralgia type pain has changed every aspect of my life, nothing is how it used to be. I have unprovoked vulvodynia and sex does not hurt. I se the vulva pain clinic in Melbourne at the royal women's hospital. I feel my vulvodynia came on after the most stressful time of my life, and that's not just normal busy life it was an awful situation that impacted on me enormously. I feel very strongly that my nerve endings are damaged due to the brain. Sitting for longer than half hour, using soap, wearing any type of pants that touch vulva area, standing for longer than an hour, stress, diet that is completely healthy( I know weird) but I think my brain takes over. All these and more make my life hell. My pain is all day everyday without medication. I have been through suicidal thoughts and most recently depression. I know I am not dying so I am lucky but to be honest because you are doing research some days I wish I were. I am just so fed up with this condition and the impact it has on everything. I have 4 children and work 4 days aweek. I am 42. Happy to help you if you need more info. Kind regards -arli

zarli

Posts : 182
Join date : 2013-08-11
Location : Australia

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Post  paulette3552 Wed Jun 25, 2014 11:19 am

Jane, I am so happy to hear you are doing research on vulvodynia. This horrible condition, came to pay me a visit in June of 2013. I also have lichen sclerosis. My life has been forever changed. I have pain when I sit, but I am pain free when I stand. I can't wear pants nor underwear. But the wearing of my apparel makes no difference when sitting. I have had terrible experiences with the medical profession over the past year, though my general practitioner has been helpful. I am being seen at the Woman's vulvar clinic, located at the Women's College hospital, in Toronto, and have been extremely disappointed in their treatment. I am taking amitriptyline as well as topical steroids for the LS. It's very difficult to discuss "invisible" pain with people, and even more so when it's regarding vulva pain. People tell me I am lucky it isn't cancer and I could be dying, and I am thankful but, there have been times, over the past year, that I wonder if I can continue living with the relentless pain. I am angry and disappointed more research isn't taking place about vulvodynia. But then research dollars aren't being spent on Lichen Sclerosis either. A condition that actually changes the architecture of a woman's genitals. Maybe they were too busy helping men achieve erections to worry or care about women's disappearing clitorises. I would be happy to answer any of your questions and thank you again for all your work and efforts.
Donna

paulette3552

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Join date : 2013-09-16

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Post  meelie Thu Jun 26, 2014 12:38 pm

I am so freaking sick of hearing people say "well be glad it isn't cancer". How dare they say this to us, pox and hell to them. Until you know how if feels to have acid burning your most private parts all the time no one can imagine what hell we are living in. I swear if someone says that one more time, I'm going to cuss them out and then knock the hell out of them. If acid were poured on men's penis's I am damn sure they would come up with a cure. There is no doubt in my mind there would be a cure within a week. I'd like to pour acid on some of the one's that I know.
Sorry, just sick to death of this curse.
Please do let us know how you are getting along. My pt gave up on me. My Dr.s won't give me pain meds and have no idea what to do. Just feeling low. Think my marriage of 47 yrs is over, can't get a job at my age, I know that no man wants to make love to me even if I wasn't burning, my children live too far away to care. Just having a pity party and when I saw the remark about cancer, at least cancer will kill me and take me out of this place.

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  zarli Sun Jun 29, 2014 11:21 am

Meelie why are you not on pain medication ? I agree with everything you said. Only yesterday I was talking to a friend and said if men had penisdynia there would have been a cure years ago, and thats not even exaggerating the fact.

Do you have other support apart from family?
Maybe a counsellor would be a good idea to think about. Part of my treatment is to see a psychologist every 3 months and It really helps me.

Anyway here for you if you ever need someone to talk to.

Z Smile

zarli

Posts : 182
Join date : 2013-08-11
Location : Australia

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Post  sailor_moon Sat Jul 12, 2014 12:05 pm

As well as the usual things, I can't exercise because the friction adds to the irritation and makes things worse. I don't go out with friends because I can't enjoy myself because I'm uncomfortable. I dont go on holidays because it is a waste of money,I cant enjoy walking around sight-seeing without aggrivating the problem. My self-esteem has been lowered to the point it stops me from socialising altogether.  A big factor a lot of people don't realise unless you have a vulva condition is it really takes its toll on your finances! Forking out so much money for specialists and ineffective treatment. In the past 12 months I have spent $6000 and still have no diagnosis or relief.

I totally agree with what the other women have said on here. More money needs to go into research and cures for vulva disorders, not erection drugs!

Totally agree when people say " oh lucky its not cancer", or "oh it could be worse"... vulva conditions ruin every single aspect of your life. It is absolute torture.
sailor_moon
sailor_moon

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Post  meelie Sat Jul 12, 2014 1:39 pm

I so so totally agree. Has managed to ruin my "golden years". I have two friends I talk to on the phone but one I don't see but maybe once a year. Just can't relate with people anymore, they say they are sorry and all that shit but they have NO idea what it's like. Can't enjoy taking my grandsons anywhere cause I'm so miserable.
BUT, and I so hesitate to say this cause I don't want to jinx it but I did some yoga with an instrutor for about 30 min. Mon and Wed. and I was pain free most of Tues, Wed, and Thursday but it came back yesterday. Don't know if it is what helped or what. I am going to continue with it next week and I will check in and let everyone know if it helped. It was heavenly Wed and Thurs. but of course I did not wear jeans or try to ride my horse or do anything strenious. So I'm not sure what it was.
Of course my relationship is over with my husband, we are still together but there have just been too many things said and NOT done to ever put it back together. He's quit went on with his life when mine stopped and I am so alone.
Anyway, I did experience a little hope this past week. We will see what the next week shows.
Hope everyone feels better and I still say if we pour acid on men's penis's there would be a cure in a month.

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  meelie Sat Jul 12, 2014 1:43 pm

Oh, you asked for medicies. My gyn would only give me neurontin, and flexeril. neither of the helped. Primary care doesn't understand a word about it tells me to take OTC drugs. He's a clueless man and I'm about to give out of my left over good stuff. That's another burder, worrying about what I'm going to do.

meelie

Posts : 136
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Location : Barnesville, Ga

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Post  sailor_moon Sat Jul 12, 2014 10:00 pm

Oh Meelie Sad you poor thing I know exactly how you feel. You need to find a different Gyno! I know what its like dealing with incompetent doctors who have no idea. Its very frustrating and depressing within itself. Every time you go to a new doctor and try something new and it doesnt work, its like a big kick in the guts (or in this case, kick in the vag!) Everytime.

I am lucky at this point my husband is still very supportive. He suffers from chronic pain himself due to 2 degenerative discs in his back as well as Heamochomatosis which causes pain in his arms and legs, all of which stop him from doing so many things, sohas some form of understanding what it's like for mr. Not the full extent, but at least he partially gets it. But we are both only 26....I fear everyday that he will leave.

I totally agree, if men suffered from this there would have been a cure years ago!

I have been on the verge of losing my job because of this. Things get so bad that I am unable to work sometimes, and having to make doctors appointments ect .

Doctors are f*ckwits. All they want to do is send me to councilling! As if I am going to spill my guts to some random person who has no freaking idea what I'm going through.
sailor_moon
sailor_moon

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Post  meelie Sat Jul 12, 2014 10:30 pm

I am ahead of you in one situation. I am old and had to quit my job three years ago after a horse accident, so I don't have that much longer to look forward to having this pain.
I am an RN and I so totally totally agree with you about Drs. Weren't to fond of them before this curse happened, around them too much in my line of duty, and now when i need them for myself, i really think less of them. I live no where near civilization. I'm in a small town at least an hour from Atlanta, Ga. the only Drs that I saw on the V membership thing are 2 hours away. One is two hours without too much traffic the other is north of Atlanta and the traffic is horriffic. Just have not made that decision to travel so far, money/gasoline are a major factor.
Am going to give yoga a month and see what happens. Am having my second back injection on Thursday and praying so so hard that it will work for both situations. Had to take one of those precious very special percocets today to just exist. When I am in such pain physically, emotionally and spiritually all at the same time that is the only relief I can find. So I'm okay at the moment.
I hope you are having a good day.

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  sailor_moon Sat Jul 12, 2014 10:47 pm

Yes being an RN you would have seen a LOT of dodgy doctors!

I am in a similar situation with travelling to see doctors ect. The closest is 3 hours away. The furthest I have travelled is 7 hours and got no answers.

Worst part in my situation is that I want to have a baby, but as long as my situation remains, I can't. I have already suffered one miscarriage with this when I first came down with my condition....the stupid doctors told me I wasn't pregndnt when I actually was, and they were pumping a million different drugs into me to try and fix me...it was only when I woke up bleeding and in excruciating pain that I realised. Now because my symptoms involve vomiting every single day, theres no way a baby would survive because of the vomiting and because I struggle to eat without being ill.

I pray that Yoga will offer you relief! It sounds great! I used to do yoga and pilates and loved it. You feel like you have had a massage after you finish! I had to stop coz exercise just makes me itchy and irritated.

Have you suggested other drugs to your doctor? Write down notes and give them to him...better yet, get him to google in his office the most effective treatment for your pain! Grrr! These doctors make me so mad! Do you have any idea of what you believe will ease your pain? Being an RN you would have a fair amount of drug knowledge. If you do you should tell the doctor and be demanding!!
sailor_moon
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