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Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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I just don't know

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I just don't know

Post  notavfan on Tue Jan 03, 2012 4:54 am

Hello. I have been on here quite a bit reading posts and figured I would finally post as I am feeling particularly low. I guess I will start at the beginning. I will try not to make this too long. This is not the first forum I have joined. At 19... almost 20... I met a guy and fell in love and got HSV while still being a virgin. I got it from oral. Dated the guy for 2 and a half years and at one point was having major pain down there and could not sit through my university classes. Doctor referred me to a gynecologist and I was diagnosed with vulvodynia and given lidocaine gel and a website to visit. After this I think the pain went away at some point. I never really used the lidocaine. Maybe once or twice. My boyfriend left me for another girl and it was very messy and he told me to kill myself. I spiraled into depression and stayed in bed for 3 months. I can't seem to remember if the pain stopped before this or maybe the laying in bed for 3 months is what helped it go away. I really wish I knew if simply taking time to just lay in bed would help. It would be boring, but I am at the point I spend a lot of time in bed anyways and I want relief! When I got back on my feet, I was fine. I eventually met my last boyfriend and we moved in together and I was so in love. The pain came back. My job involves sitting all day. I had moved to work from home, so I was even able to wear pjs/sweats/no undies/nothing if I had to. Still pain. I got depressed. I went out drinking too much because drinking was the only time I didn't feel pain. I moved away when the boyfriend touched me because I was hurting and sex was not going to happen. I cried so much. He left me for another girl. I know it is my fault I lost the love of my life because I can't deal with the pain. Venlafaxine did not work. On Cymbalta now and it doesn't seem to help. I was going to the gynecology clinic so it was a new person each time and the last time I cried and the girl just looked bored. I had my doctor refer me to an actual gynecologist, but it is months before I get in. I was accepted to school in september, but I don't think I will be able to go if I get no pain relief before then. The only time I remember not being in pain in the last year is when I went on a carribean cruise. I think it is due to not sitting around much, wearing skirts/dresses/bathing suits. I was so excited to have sex when I got home because I was not in pain at all!!! Then it all came back once I got back to work. I guess that means I have provoked vulvodynia. I can actually have sex and I don't believe there is much pain, only initially. It is the sitting all day that seems to make the pain come. It has been really bad lately and I want relief so bad! I spend most of my day googling this damn thing I am sorry for the rant, but I am really upset and this made me feel better. Now if I could only snap my fingers and be rid of the pain!

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Re: I just don't know

Post  notavfan on Tue Jan 03, 2012 4:47 pm

I know this was a total ramble, sorry. If anyone has the same kind of provoked pain that makes sitting horrible, please share what worked for you. Once it has been provoked by sitting it just doesn't go away completely.... ever. So really I am in constant pain. I'm going to my doctor in 2 days and he knows pretty much nothing about this condition so I want to bring in some ideas to see what we can try next. Any suggestions would be greatly appreciated.

PS. Any Canadians on here?

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Re: I just don't know

Post  ButterflyLiz on Tue Jan 03, 2012 9:27 pm

Hi there, welcome to the forum. Sorry to hear you’re feeling low at the moment, it sounds like you’ve really been through the wringer Sad My pain patterns sound quite similar to yours, sitting is a big trigger for me. I have both provoked and background pain, the intensity ebbs & flows. If I’m feeling fine but then sit down for a while, it flares everything up. I often wonder if just lying down for a few weeks would help matters, too. That is the classic pain pattern for nerve entrapment, by the way – sitting makes it worse and lying down makes it better (though not always straight away). However from what I understand, with nerve entrapment the pain is constant and doesn’t abate. Still, it seems weird that the pain of vulvodynia often seems to follow the same pattern.

Anyhow, what can I say that might be helpful? First of all, as sitting is a huge pain, have you looked into getting a pressure relief cushion for your chair? Getting one that I sit on every day pretty much made me able to stay at work. It’s still not perfect but I don’t know what I would do without it. There’s a thread about various cushions here http://www.vulvodyniasupportforum.com/t437-cushion-question#4339 or failing that, could you rearrange your workstation to work standing up?

For the really bad flare up times, I recommend topical anaesthetic (lidocaine, basically, I use an over the counter cream called vagisil which has it in) and ice (I wrap frozen peas in a food bag & apply cautiously – too much can be bad!).

Sorry to hear your healthcare providers have been so crap. It can be an uphill battle but don’t lose heart – you deserve to get help. Anti-depressants didn’t help my pain but pregabalin, which is an anti-convulsant, has definitely helped to dampen it down. Maybe that’s something you could look at? And have you looked into physiotherapy for the pelvic floor muscles? A lot of us with v hold them too tightly which makes the pain worse.

Please try not to beat yourself up about the effects that vulvodynia has had on you and about not being able to deal with the pain. We weren’t designed to deal with it and we shouldn’t have to put up with it! Unfortunately until the wider world is better educated, we have to cope with others’ ignorance as well as our own pain. This needs to change.

Stay strong and I hope your doctor’s appointment is fruitful x
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Re: I just don't know

Post  notavfan on Wed Jan 04, 2012 4:01 am

I guess we are all frustrated... that's why we are here! lol. It is nice to talk to people going through this though!

I have been looking at cushions online quite a bit. I just don't want to spend much on something that may not work. Plus it seems all these ones online are from the US or UK and I don't know if the shipping price to me in Canada would be retarded or not. I wonder if one of the hemerroid donuts would work.

Oh I actually work from home. I pretty much sit around in pjs or sweats and avoid underwear. I sometimes even stand. I've even laid in bed and worked, but that is kind of difficult and not productive. 11 hour shifts are long and I get sleepy. lol. I keep wanting to go back to the office to work since my ex left me so I can socialize, but I don't think I can handle it. I went in one day and did an 8 hour shift and was seriously on the verge of tears for the last while. But of course I had to talk and act like everything was fine. My big concern is school in september. I will have to learn to sit through 8 hour days. I need some relief by then!

Funny you say pregabalin, because last time I was there my doctor suggested Lyrica or Cymbalta but decided on Cymbalta due to it have depression/anxiety properties and I was on anxiety meds before. Lyrica is definitely my next choice! How soon did you fine relief on it? I am worried my doc will say I just didn't give Cymbalta long enough to help. I have been on 60mg for weeks now. I also asked about the pelvic floor muscles and my doctor said he didn't think I needed that and that he thought this was all in my nerves. Mind you this is my family doctor. I still have to wait 2 more months to see the gynecologist I got referred to. I can't wait that long!!!

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Re: I just don't know

Post  ButterflyLiz on Thu Jan 05, 2012 1:54 pm

Hiya. I know what you mean about being reluctant to buy things that might not work and only you can decide if it's worth it or not to try stuff. However I would say that my cushion basically meant the difference between being able to work and not. Before I got it I also struggled to get through a day of sitting and by the end of work would be close to tears with the pain. I know the same things don't help everyone but many of us do seem to have found some relief with cushions. It seems a shame to miss out on being at school or the office because of this, or trying to soldier through in agony. I completely sympathise though, I used to be the same.

I emailed the UK based company where I got my fab cushion (http://www.putnams.co.uk/sitting/bonyparts-sero-pressure-cushion) and they said they would email to Canada for £15. So together with the cusion that would be £40, or about 63 Canadian dollars. Just to give you an idea of price. Also, when I got my first one my employer actually paid for it for me so I could stay at work. Don't know if this is an option for you. There may also be access to work charities where you are that could help out with costs? Be careful with the ones that are just a ring as they can restrict circulation.

It's difficult to say when the lyrica started to help. I was sceptical at first as other drugs I'd tried did nothing. It wasn't one big dramatic change but gradually I noticed the pain wasn't so intense any more. I guess maybe after a month or two I was convinced enough to stay on it and up the doseage.

If you're interested in reading a bit more about physio & how it might help, check out www.pelvicphysiotherapy.com. My physio gave me this website and said all the exercises she will teach me are on there. I would have thought that whatever the reason for the pain, if you have pain down there it's natural to tense the muscles and most of us can probably benefit to some degree from learning to relax them properly.

Anyhow, take care!
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Re: I just don't know

Post  notavfan on Sat Jan 07, 2012 3:33 am

ButterflyLiz, you have been super helpful! I REALLY appreciate it! Virtual hugs! lol. I will do some more looking into this cushion. It would be nice to find one in Canada, but it also sounds like the money would be worth it no matter what I end up doing! Also, the link you gave for pelvic muscle exercises looks really great! I feel like at this time, it is really on me to find something to help myself. My doctor is letting me try Lyrica and my fingers are crossed! It would be nice to get some relief without having to wait 2 more months to see this gynecologist.

I got to wondering the other day after reading many many MANY stories from other people, if most people that have this sit all day at work or school? Essentially, do more people have vulvodynia that have to sit and put pressure on that area each day, as compared to people who stand all day? I am thinking maybe I picked the wrong job...

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Re: I just don't know

Post  SimplyBelle on Mon Jan 09, 2012 5:58 am

Canadian!

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Re: I just don't know

Post  Sarah001 on Tue Jan 10, 2012 8:04 pm

More people with sedentary jobs get pelvic pain and it's likely down to poor muscle tone around the pelvis and spine from all the sitting, flat glutes and lazy cores if you know what I mean! A study found housewives had the highest incidence of pelvic pain which is probably down to giving birth and then sitting jobs came in a close second. I know I didn't have any pelvic pain when I was younger and more muscular.
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Re: I just don't know

Post  notavfan on Wed Jan 11, 2012 3:39 am

Cool to see another canuck on here, SimplyBelle. Eh? (I had to add "eh?" to really rep Canada, lol).

So if I was to change jobs to something with standing/moving, maybe this would resolve itself. I know my core is horrible, and I realize this more now that I go to the gym. Maybe the core strengthening will help. I won't hold my breathe.

I just started Lyrica, but have felt nauseous/dizzy all day. Working like that was awful. I hope this is not a side effect and that I just ate something bad or my body is tired, because I just started this on the lowest dose and have to move up gradually and I want this to be the one that works!

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Re: I just don't know

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