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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

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: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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 …

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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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