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» It feels like I’m going to have pain forever
Yesterday at 12:11 pm by mhhh

» It feels like I’m going to have pain forever
Yesterday at 10:01 am by dunkelma

» It feels like I’m going to have pain forever
Yesterday at 8:51 am by dunkelma

» Honey decreased my pain considerably!
Sun Jul 15, 2018 12:53 pm by mhhh

» Birth control pills can cause vestibulitis
Sun Jul 15, 2018 1:15 am by MDias

» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

» Hi girls! New in this forum
Fri Jul 13, 2018 2:31 pm by Gaby

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 1

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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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