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» 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

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» 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). …

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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 …

Comments: 0


Lidocaine had saved me

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Lidocaine had saved me

Post  lolainslacks on Tue May 24, 2011 12:10 pm

I'm sorry, I'm really not sure where to post this topic. You guys seem to have a section for ranting, but not one for celebrating. I just wanted to express my utter joy at having found something that has almost completely removed my pain.

After waiting for so long, I was finally given lidocaine gel. It's not 5% like I expected, since they don't make that anymore (at least where I live), but 2% seems to be working perfectly. The first time I used it, I didn't apply it properly, and I rushed in immediately with my dilators, expecting the lidocaine to be some sort of miracle cure. And when I still felt pain I was horrified that even this wouldn't work for me. But I calmed down, tried again, and now know how to use it the right way, and I can honestly say that my pain is now almost completely gone.

It's a real hassle having to use this stuff though, as it's really really messy. It comes in a syringe, and you squirt it inside yourself twice a day. And since my pain is located slightly inside the entrance, I have to use my finger to sort of spread it around and make sure it's geting right into the painful area. It pours out and gets all over the place, and is difficult to wipe away, which is annoying. I do this firstly in the morning, and then get dressed again and go about my day. And there is NO BURNING. When I sit down, when I wear tight clothes, there is no pain. It's amazing. I'm always aware of my vagina, always. It's not like an internal organ that you know exists but that you can't feel, like a kidney, or a spleen. I can always feel it. But not anymore, because of this fantastic stuff.

In the evening I apply it again, but this time I sit for five minutes and let it numb me gradually. Then I start using my dilators. Before the lidocaine, I could only use the first two, and even that burned me. Any more than that was impossible. And with my fingers, I could only insert one -- two was out of the question. Now I can get up to the third dilator, and insert three fingers with NO PAIN. I can't tell you how happy this has made me. I still have to take my time, and work up to the third, because as far as my muscles are concerned, my vagina is not used to being penetrated like this. The whole process takes about an hour.

--

The only pain I feel now is the stretching that all women feel when they try to insert something large for the first time. I have always have vulvodynia, so I've never been able to lose my virginity, and because of the pain I've ever been able to insert anything of significant size. So now when I try I feel that horrible muscle stretch pain. But at least I know this is a normal thing that every woman feels, and that I can ovecome it gradually with the dilators.

I didn't make this post to gloat about how I am 'cured', or to make other women feel bad about their pain. I wanted to show you that although the same treatment doesn't work for everyone, IT IS POSSBILE to go from being unable to sit comfortably, and unable to insert anything, to feeling virtually no pain at all. Keep searching for your cure, I'm sure it's out there. It took me four years to find mine.

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Re: Lidocaine had saved me

Post  Sarah001 on Tue May 24, 2011 6:56 pm

I'm really pleased lidocaine has been so helpful for you, I didn't get on with it and as I have generalised V it probably wouldn't have worked so well for me anyway. I'm a bit of a stickler when it comes to the word "cure" too as I would only consider myself cured if it had gone away and I wasn't having to use tablets, topical treatments etc to mask it but that's just me! Rolling Eyes Whatever gives relief is definitely welcome so the fact you're feeling so good is brilliant. cheers
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Re: Lidocaine had saved me

Post  lolainslacks on Tue May 24, 2011 7:27 pm

Thank you!

Yes, I certainly don't consider myself 'cured'. I still resent the fact that I have to use this at all, and I will still have a lot of trouble with sex in the future. I mean, I can't imagine it's possible to use the lidocaine during my period, and that's when I'm most sensitive. For a week leading up to my period, and a few days after, I'm more sensitive than ever, lidocaine or no lidocaine, so if I was in a relationship I'd have to say no to any sex at all for almost two weeks every month. And I'll never be able to be spontaneous about it, since lidocaine is necessary and it takes five to ten minutes to take effect. My life will certainly not be normal. But I'm just overjoyed to have some relief and know that sex won't be out of the question now.

I'm sorry to hear that lidocaine didn't work for you. Are you trying other treatment options?

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Re: Lidocaine had saved me

Post  Aussie on Wed May 25, 2011 2:30 am

So glad to hear you ahve found something that works for you. Lidocane was the first thing I tried and it burned like hell, never went numb. So I am suprised you took so long to find it. I find most ladies are given lidocane as a treatment first off. When I went across to Adalaide for intensive treatment with Marek Jantos they had a lidocane gel they had compounded by a pharmacy in Sydney which took 20 minutes to take effect but there was no burning. I had to use this because the trigger points they wanted to get to had been too sore to touch previously... That numbed me a little but wore off after about an hour. If I can find out the mixture that was compounded I will post.

Really happy you have found something to ease your pain Smile I don't think we would be so bothered about a cure, just to be pain free, whatever the price would be wonderful. I too have Generalised V so, which I think is a completely seperate condition in itself.

Hope you have many many more days pain free to come, and you will get there with sex. The muscles feel stretched probably because of all the trigger points. Have you had your pelvic floor assessed?

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Re: Lidocaine had saved me

Post  Mouse on Wed May 25, 2011 6:41 am

Wwwoohooooo!!!! I'm really pleased you have found something that works. How awesome to have some success. It's such a weird bloody thing isn't it? This is why I will never discount trying whatever you are comfortable with. Drugs were a no go for me but I didn't really give them a chance because I couldn't handle to brain fog. There's a really good lesson here in continuing to try new treatments. The condition is so unique in each of us.

I hope you continue to have success Smile Take care.

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Re: Lidocaine had saved me

Post  Sebby (Admin) on Thu May 26, 2011 8:18 pm


Am so happy for you!

This has spurred me on to keep trying it as I dont think I was using it right..not using enough

Also good idea about a celebrating section...

Will pose this question to the other members in the next newsletter...wow I am well behind writing that..


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Re: Lidocaine had saved me

Post  lolainslacks on Thu May 26, 2011 11:18 pm

Thank you guys!!

Aussie -- Lidocaine was actually the first treatment I was offered, it's just that it took so many years for a doctor to finally listen to me and want to treat me. They all thought I was just imagining the pain, or that it was a result of me being young and inexperienced. So I tried lots of things on my own (dilators, changing my diet, salt baths, taking supplements, etc) but none of these minor treatments helped.

Sebbie -- I really hope the lidocaine works for you if you decide to try it again. The first time I tried it, it didn't work for me either. I didn't use enough, and I didn't spread it around to make sure it was exactly where it needed to be, so I still had pain and felt really discouraged. I had to persevere and make sure I was using it properly. Good luck! And yes, I think a celebration section would be a good idea. It's important to acknowledge the positive steps we make during our recoveries, even if they're small. I have an anxiety disorder, and I'm a member of an anxiety forum, and that's something that they have; a place to celebrate small victories.

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Re: Lidocaine had saved me

Post  jules on Wed Jun 08, 2011 3:18 am

I love the idea of a celebration section. I'm guessing our minds don't go there naturally because we are so busy w/ the advice and trying to find a cure or relief. Congrats! I'm so happy you found something that helps. I have generalized V. I have tried lidocaine in the past and my skin could not handle it. Now, my skin can handle it. but it doesn't give me relief for long. It's nice to know that some of the treatments are helping women. I am on many meds and moving toward surgery...nuerotransmitter. i'm not holding out all hope. it will be a nice surprise if it helps. Hope you keep on feeling numb down under. Cool

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Re: Lidocaine had saved me

Post  kateelizabeth on Tue Aug 09, 2011 7:06 pm

Congratulations!!!! its great to hear some success Smile

I have always been scared to use lidocaine internally... maybe I will try x

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Re: Lidocaine had saved me

Post  red on Tue Aug 30, 2011 2:16 am

That is awesome congrats!! definately the dream right there, and makes me want to use my lidocaine more frequently

I have some questions ...

How much did you use and how often did you use it? I think on my tube it says use it up to 3 times a day? (thats strange that they gave it to you in a sryinge?)

also a comment, while it is awesome and probably is the lidocaine that has made you feel so much better, it would be wise to take a note of other things you are doing currently
such as what food you are eating whether you are avoiding alcohol/caffiene etc and what exercise you are doing, because it may be that these are affecting it too and helping

I don't know how many times ive gone through a good patch and when it passes i can't remember those details and wish i had written them down...

Here's to hoping your good times stick around girl ! enjoy xxx


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Re: Lidocaine had saved me

Post  lolainslacks on Tue Aug 30, 2011 6:07 pm

Thank you!

I get a big box full of syringes, and they are all 11ml. I'm not sure how to describe how much that is. They are supposed to be single-use, so you're supposed to use all of it and then throw the syringe away. I use about 3/4 of it, and use the rest to lubricate my dilators, as I use these in conjunction with the lidocaine.

It is quite a lot. Also -- excuse me for being gross -- some of it seeps out of me because there's nowhere for it to go. I'm trying to think of how to describe how much it is. I guess if you imagine cupping your hand and pouring water into it, it's about as much as you could hold without it spilling over the edge. That's a terrible comparison, but you get the point.

I am supposed to use it twice a day for long term results, but I don't do that anymore because after a while I realised it wasn't doing anything for me, plus it was a hassle because applying the stuff is so messy and time-consuming.

Anyway, I only use it now when I'm using my dilators.

That's great advice about keeping note of any changes you make. I can imagine how that would be useful. However, I can single out the lidocaine as my saviour because I only use it for insertion, and because if I try insertion with no lidocaine it still hurts a lot.

If you have any more questions I'd be happy to answer them!

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Re: Lidocaine had saved me

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