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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 …

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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, …

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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 …

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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 …

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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 …

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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 …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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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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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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