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    » Post Vestibulectomy
    Tue Aug 22, 2017 6:48 pm by JGD13

    » Vestibulectomy
    Fri Aug 18, 2017 12:39 pm by Hopeitworks

    » Anyone been to see Dr.Claire Bailey in Birmingham?
    Tue Aug 15, 2017 6:36 pm by Kezz

    » 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

    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: 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 …

    Comments: 4

    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.

    Comments: 2

    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 …

    Comments: 0


    I'm kicking the habit

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    I'm kicking the habit

    Post  Mouse on Wed Oct 20, 2010 2:28 pm

    Today I needed a new prescription of Gabapentin, I phoned the Dr's surgery and was told I was breaking a cardinal rule by phoning and not emailing "didn't I know the correct proceedure? so many patients rah rah". Well actually I don't know the correct proceedure *insert appropriate swear words* you fucken moron *oh ok it appears I do need to say them as well*. My experience with anything pharmaceutical is very limited. I told the nasty cow that they weren't working anyway so I'm expecting when I hear back from my GP I will have to increase the dose.

    SO I kicked them. I'd forgotten to take one at midday anyway, didn't take one last night and here I am on the computer at 3am. I can't sleep, needed the loo and have a rotten stomach ache. I know it says do not stop taking them so I guess weaning off is the answer.

    Do these drugs ever work? When I had Ami I was a complete mess now with the Gabapentin the side effects aren't as harsh but I feel like a blowfish, I'm getting chubbier by the minute, I'm light sensitive, feel like my brain is being reprogrammed (go figure) .....but not in a good way. I'm emotional and we all know my therapist said I don't have any emotions so they can F$%@ right off.

    Are the flaming drugs worse than the thunder down under? I read an article on chronic pain today. It says a bit about becoming isolated and withdrawing from people. I haven't seen my family in months because everything seems to annoy me these days and I just prefer to stay at home.

    Hmmmm so maybe I'll try getting off the sofa, try to find some endorphins - if only they came in liquid form and I could mix them with vodka. And maybe since I'm feeling particularly brave I'll try to take some control back... if that fails I have my therapist next week to pick up the pieces.

    Check out the article - this was in the Feb edition of my fav magazine which I now buy to look at the pictures because I can't concentrate. Apparently there are articles as well.

    http://www.mindfood.com/at-chronic-pain-ruling-life-health-body.seo

    Mouse

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    Re: I'm kicking the habit

    Post  jules on Thu Nov 11, 2010 5:43 am

    Hi Mouse,

    i am getting back online after taking a break for a few weeks. no break from pain, just too busy. just wondering did you go back on the gabepentin. I know it is not a good idea to just stop taking them. how many miligrams were you on? how are you doing pain-wise off this med.? for me, this was the med that cut my pain in half. it was the first med that gave me hope w/ no side effects at all. but, it took 3000 mgs for me to get some relief. i'm still on it, but also take lyrica. the lyrica is making me gain weight and i don't think it is working too well. i'd like to try Cymbata. i plan to talk w/ my doc soon. i can't believe you can call a clinic to get medication etc. it sounds like you all have a lot of barriers to obtaining the necessary health care and medication. it is not fair. did you go off Gabepentin completely? looking for a update.

    jules

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    Re: I'm kicking the habit

    Post  jules on Thu Nov 11, 2010 6:00 am

    Mouse, thanks for the article on pain. I found it interesting that women have lower pain thresholds then men. Everything in the article rang true.

    jules

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    Re: I'm kicking the habit

    Post  Mouse on Fri Nov 12, 2010 9:05 am

    Hi Jules,

    I'm glad you liked the article. In the current edition there's an article on meditation. I'm doing really well with that now. In fact I think I might be a convert - which is great because without it I may have become a convict... hmmm anger issues Smile

    The drugs have gone, I was on 900mgs. I had a letter from my specialist saying it could take up to 3 x times that to have any effect. Too late! The squiffiness was from the other shite disease and it lasted 10 bloody days ahhhh nasty. As for the pain, after a month of constant crap it's been fairly mild for the few weeks and this includes just having my period. I'm also not working now so have REALLY reduced my stress levels.

    I've been here before I might add.

    Mouse

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    Re: I'm kicking the habit

    Post  jules on Sat Nov 13, 2010 2:16 am

    Glad to hear your pain has decreased. My P.T. wants me to work on relaxation which goes hand in hand w/ meditation. I am so not the relaxation type. i have a high stress full-time job that probably does not make things any better. keep me posted on your pain.

    jules

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    Re: I'm kicking the habit

    Post  Mouse on Sat Nov 13, 2010 3:05 am

    Hey Jules, believe me I'm not the meditation type either. I have trouble concentrating on anything these days. For a couple of months I skirted around the mindfulness but now I can really do it! It took a bit of persistance because I really didn't think it was for me. And then out of the blue I did 15 minutes without opening one eye every few seconds to look at the clock.

    It now makes perfect sense to me to work on calming the voices in my head. I think the mind/body connection is the best place to start looking for an answer. I've been working on destressing, taking time out, eating healthier, cutting back on coffee and alcohol. We have natural feel good chemicals which I'm trying to tap into now I've shied away from doing the drugs. I don't know what my specialist will say when I tell her so I feel like I now have to own the outcome of that decision.

    Does it make sense to you that with a high stress job and a chronic pain condition you need to cut your body some slack. Stress manifests in so many ways, without it we would be dead but too much is a killer also.

    How about you humour me and give it a go? Even if it's learning some relaxation breathing. My aim is to take some control back. I really hope you give it some thought. If I could find a Mindfulness course I would sign all my friends up as their christmas present. I'd have to round them up by pretending there was alcohol. There would be some swearing, maybe some tantrums and a few "just give another f%$#*n candle" BUT I can guarantee it would change a few lives.

    Mouse

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    Re: I'm kicking the habit

    Post  jules on Mon Nov 22, 2010 4:04 am

    hi Mouse,

    i haven't been on for awhile...again. i'm with you on the meditation. i will try. i actually need to because my P.T. is requesting me to. i have to pay attention to my breathing and relax. i should also cut out some of the alcohol and caffeine out. notice i say the word "should." i need to eat healthier and drink less etc. will work on it. in the meantime, i have been in pain today and depressed this past week. i am hoping for anti depressants when i see my doc next week. i need something to get me through.

    how are things w/ you lately?

    jules

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    Re: I'm kicking the habit

    Post  Mouse on Mon Nov 22, 2010 7:18 am

    Hey Jules,

    Lovely to hear from you. I hope you are feeling better, this fucken sucks the life out doesn't it.

    I've had 3 really good weeks with low pain then today has been shite. More stress and a shit nights sleep and here we go again.

    I've downloaded some meditation. It's really good to have some guided ones. I'm going to buy this one I think.

    http://www.meditationforbeginners.info/mindfulness-meditation-for-pain-relief-guided-practices-for-reclaiming-your-body-and-your-life/

    http://www.mindfulnessdvd.com/chronic-pain-article.html

    I got completely ratfaced on Saturday night! Aahhhhh maybe that was the trigger? FFS!

    Take care
    Vicki

    Mouse

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    Re: I'm kicking the habit

    Post  jules on Thu Nov 25, 2010 5:41 pm

    personally, i have never noticed a difference in pain as to when i'm not drinking for a period of time or when i do drink (pain-wise). Currently, i have a damn yeast infection (thrush, for those England folks). It is so hard to decipher the yeast infection symptoms between the Vulvodynia symptoms. I was in lots of pain and not too comfy. I got a prescription for Diflucan and now i'm hoping it goes bye-bye soon. What i wouldn't do to give away my woman parts for free. they cause more problems then they are worth. the pain was horrific the other night, but not as bad today. So today is Thanksgiving Day in the US. Today we all eat a huge meal w/ probably about 3000 calories and recognize what we are thankful for. So...getting prepared to stuff my gut w/ food at our relative's home. Fun!

    Thanks for the links. will look later. haven't done much relaxing, but i have worked out and that makes me feel good...gets the stress out...even thought there is some pain associated w/ it.

    have a great day!

    jules

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    Re: I'm kicking the habit

    Post  Mouse on Thu Nov 25, 2010 7:37 pm

    Happy Thanksgiving hon, I hope you managed to enjoy the food and the family Smile I hope you did some "real" smiling, if not faking it is fine hahhaaa.

    It's funny that a lot of the women on the vulvodynia sites have constant yeast infections. One day we'll figure it out. I read an article about the effects of refined sugar on the body woohooo. I think a diet of bread and water might be the answer - if gluten wasn't toxic and you never know what's in the water!

    Kid wants laptop BRB

    Mouse

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    Re: I'm kicking the habit

    Post  Mouse on Thu Nov 25, 2010 8:37 pm

    Right that's the kid dispatched to his last 2 exams, the summer holidays will begin this afternoon! UGH, no more peace and quiet although he does sleep until lunch time and spends the rest of the day food seeking. One more year of high school for him and then empty nest for us. Oh yeah!

    Stress is making a big comeback in this house. I'm finding it really hard to relax which is stupid because I'm not working. I've been to my therapist this week and she thinks I'm almost normal - imagine that. So a bit of panic is starting to set in because I'm pretty sure I'll suck at flying solo. I'm also about to kill the cat - the anger issues are back! The flaming thing is scratching the window next to me which makes the most annoying sound in the world. The door is open, she just wants to get in a different way. Anyway so giving up therapy is frightening the bejesus out of me. Todays happy thoughts are: this is never going away, I can't share this mess with my friends, I'll never be able to cope with working. I'm about to give myself a slap.

    I could happily give away my bits as well, the pain is everywhere at the moment. Since Mondays episode, it's a moving target.

    So Jules, it's bloody meditation time Smile

    Mouse

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    Re: I'm kicking the habit

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