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» Vestibulectomy today and no pain
Today at 3:28 pm by Dsrt16

» vestibulectomy success
Yesterday at 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:06 am by Jgreen81

» Pain aftee vestibulectimy
Yesterday at 12:03 am by Jgreen81

» Freaking out because I don't think surgery worked HELP!!!!
Yesterday at 12:01 am by Jgreen81

» Vulvodynia help
Wed Nov 15, 2017 1:04 pm by ekaterina1996

» FACEBOOK VULVODYNIA SUPPORT GROUP (SECRET)
Tue Nov 14, 2017 9:53 pm by Dsrt16

» Needing some reassurance
Sun Nov 12, 2017 3:04 pm by Nicmay

» Vulvodynia burning mouth and bladder discomfort
Fri Nov 10, 2017 7:26 pm by Zbrown

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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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 …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 0

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: 4

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, …

Comments: 9

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 …

Comments: 5

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 …

Comments: 0

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 …

Comments: 4

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


One more for the pot

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One more for the pot

Post  ves on Mon Mar 21, 2011 2:03 am

Hi there,

Seems there's a new one joining every day now so thought I would take the plunge and say hi. It will be nice to talk to others with similar issues....

So, I'm 27, live in London, and was diagnosed with what was then called vestibulitis when I was 17. So far 10 years and no change despite every treatment under the sun- canesten (even though no thrush, thanks doctor)hormone gels, emollients, cortisone etc. Funnily enough when I was on the umpteenth visito to a new gyno years ago for this, she didn't have anything to add about the vestiublodynia, but discovered I has PCOS which was useful I suppose! One thing I haven't tried is any PT, any kind of biofeedback, dilators etc- reason being that I haven't so far felt I needed them or that my pelvic floor is particularly screwed up. However I may need to rethink that (see below!)

I know the research is still pretty patchy, although I would assume that I have the primary or congenital version, as my pain was not precipitated by any type of infection as far as I can remember, although I do remember it beginning quite suddenly when I would feel burning after peeing for about 5 minutes, which is what first took me to the doctor. Thankfully that seems to have gone now but the essential symptoms (red and raw, basically) have never fluctuated regardless as far as I can tell of medication, cycle or anything else! I was put on amitryptylene (can't remember how to spell it) which sent me to cloud 9 for about 2 months after starting it before I got used to it. That was nice as I was incredibly happy, however it didn't actually help the pain !Laughing . Since then I've stopped it as the side effects (dry mouth, wooziness) got to me after a few years.

I was offered lignocaine 5% as well which is pretty great, I don't find the burning associated with it disturbing thankfully as I know some do and I don't have a reaction to it. my complaint is that it's not strong enough, if it really knocked the nerve endings on the head properly, it would vastly improve my sex life! I assume it's not produced in greater strength as that presumably wouldn't be too good for you if used regularly, sigh.

Anyway, my last relationship was ok thankfully, it didn't hurt too much and I applied lignocaine when it did. However I had a fairly horrific experience the other day- have just started dating again, finally got down to it, and um.... it turns out I can't really deal so well with anyone much er, larger, than my ex. In the end we just had to stop which was pretty embarrasing as you don't want to have to go into your gynecological history with a guy you haven't been with all that long, it's not the greatest pillow talk after let alone if you can't finish the act! I hadn't used lignocaine as I hadn't thought I'd need it but clearly I need to rethink that.

Anyway, I try not to get too despondent as I guess there's no point really, but as I know you'll all understand, this does get very frustrating at times and so I look forward to talking to everyone on here and hopefully having a look through and getting some tips.

Surgery does seem tempting at times, but then I read the horror stories!


Anyway, hello...

ves

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Re: One more for the pot

Post  noni on Mon Mar 21, 2011 2:19 am

Hey!

Welcome!!!

I would love to write more but I am super tired!Its late in this part of the globe!

Take care,
noni
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Re: One more for the pot

Post  ves on Tue Mar 22, 2011 11:46 am

thanks Noni Smile

ves

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Re: One more for the pot

Post  Sebby (Admin) on Tue Mar 22, 2011 8:00 pm


Hi ves and welcome to the forum

I have VVS since 13 when I first tried tampons and sex has always hurt to some degree.

I am currently trying the pelvic floor biofeedback option. I am using the home training kit from Dr Glazer's site Vulvodynia.com. It will be many months before I notice any improvement although unfortunatly I have developed an allergy to the electrode I place under my belly button! Thankfully im ok with the vaginal sensor.

I am also on Pregabalin and have noticed a small reduction in pain and shorter flare ups. I have been on 300mg for about 5 weeks. Dr said it could take up to 2 months to see the full effect

I have asked to be reffered to Whips Cross hospital as they have a dermo vulval clinic and am still awaiting the appointment

I deff think its worth giving the whole Pelvic Floor thing a go.

I have been told I need to start dating again (been single for 2years) by Dr Glazer and to regain my sexual self lol If there is a sexual self left lol

I would tell anyone I was serious about dating regularly about the V from the outset. I would also not rush into intercourse but learn to enjoy other aspects of sex again.

Its a scarey thought and one that I have not yet ventured into yet as I really dont know where to start! Good luck with your treatment and keep us updated also good luck with the dating Smile

P.S. read my video consultation with dr glazer post. It tells you what he said about the pelvic floor and sex and dating

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Re: One more for the pot

Post  ves on Tue Mar 22, 2011 10:17 pm

Thanks Sebby,

I will def have a look at the video consultation thread- interesting about Whipps Cross as well I didn't know about them! I think, yeah, I do need to bite the bullet and have a look at my pelvic floor. I think I've just been avoiding it because my general reaction to all this is hoping that if I ignore it it will go away or I somehow won't notice it, which is not very sensible really. I think it's because I just kind of resent its presence in my life so much I kind of want to show it what's what by just ignoring it (which I know is kind of childish and also clearly bonkers... Rolling Eyes )

Anyway I will definitely have to go about the dating thing differently if last time was anything to go by, and yes will keep you posted!

Anyway I'm off to read the rest of the board so I can 'meet' everyone.

God this is just such a stupid condition, you know? And it's not like walking around with a sprained wrist where everyone asks if your wrist is hurting and is careful of you and sympathetic. You can't just sit down with a group of strangers at a meeting, say, and say 'wow, my vagina really hurts today' and have everyone nod in sympathy! I think it's that aspect of it that annoys me most (which is why I'm glad I found this place!)

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Re: One more for the pot

Post  Mouse on Wed Mar 23, 2011 9:20 pm

Hey there and welcome!

Definitely give the physio a go, it's just nice to know what's happening down there. Physio has worked wonders for me =)

Maybe also acknowledge the bastard and attack it head on! There are some great resources for sex without penetration also.

It's awkward having a chronic pain condition of this nature. It does help to talk though, have you got a therapist? Most of us do, it's a crazy and frustrating condition, unloading all the frustration helps a lot. You could say to people you have pelvic pain, only the nosey or very stupid would ask further questions.

We are on FB if you would like to join, it's private and doesn't post to your wall. Sebby can hook you up with that.

So a huge welcome. I hope you find some helpful information. We're all doing the same thing every day and some of us are making great progress!

Vicki

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Re: One more for the pot

Post  naomi on Thu Mar 24, 2011 11:27 am

hello! welcome to the forum!

these girls are a bunch of nutters...but lovely nutters at that Smile

Nai xxxx
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Re: One more for the pot

Post  Sebby (Admin) on Sat Mar 26, 2011 6:05 pm


Yep it frustrates me too that I cant just come out and say "oh my vulvar really hurts today" like you can with other areas of the body but I do wonder if men with willy conditions feel the same? Im guessing they do...Hmmm wonder if there is a willy condition forum? lol

I've got my dermo appt through from Whips Cross, not till May but I did ask to be seen by the top consultant so I guess it would be a wait. I will let you know how it goes.


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Re: One more for the pot

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