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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Vulvodynia research help

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Vulvodynia research help

Post  janebowering on 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
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Re: Vulvodynia research help

Post  zarli on 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

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Rejoice

Post  paulette3552 on 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

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Re: Vulvodynia research help

Post  meelie on 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.

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Re: Vulvodynia research help

Post  zarli on 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

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Re: Vulvodynia research help

Post  sailor_moon on 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.
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Re: Vulvodynia research help

Post  meelie on 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.

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Re: Vulvodynia research help

Post  meelie on 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.

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Re: Vulvodynia research help

Post  sailor_moon on 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.
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Re: Vulvodynia research help

Post  meelie on 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.

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Re: Vulvodynia research help

Post  sailor_moon on 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!!
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