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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 beginner question

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Lidocaine beginner question

Post  penfebruary on Wed Jan 11, 2012 4:48 pm

I've just been prescribed instillagel gel - after originally getting a prescription for something that doesnt exist - and am now even more angry that the pharmacy has failed to include an instruction leaflet. Currently furious at all of this neglect. Anyway.
Having now looked it up on the web I am even more angry to find that I am not sure this is the correct medicine - it comes in 6 internal dispensers and recommends using all of one dispenser per go. However, seeing as the whole point of the lidocaine gel is to act as a numbing agent for my erratic flare ups, i dont see how having loads of lidocaine in a maximum of 6 goes is any use to me. Does anyone know anything else/uses this gel and knows more about how it can be used?
Thanks
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Re: Lidocaine beginner question

Post  ButterflyLiz on Wed Jan 11, 2012 6:21 pm

I know hun it's a load of cack isn't it. I had exactly the same problem. Was the thing you first got prescribed xylocaine by any chance?

Instillagel is normally used to insert catheters which is why I think it's only available in a "one shot" dispenser. They just don't produce it thinking it's going to be used for anything else. All I can suggest is that you buy a small, empty plastic pot, empty the whole syringe into it & then apply using your finger as and when needed. When I first opened one of the syringes, I tried to just squeeze a bit out and save the rest for later but that went horribly wrong & was pretty much impossible cos it's so runny.
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Re: Lidocaine beginner question

Post  lolainslacks on Wed Jan 11, 2012 7:59 pm

I use Instillagel. It has helped me so much, when I use it penetration is painless. Which is a miracle because without it penetration is like the worst pain in the world.

I get it in 11ml syringes, and I use virtually the whole syringe every time. That is a lot, and forgive the tmi but, a lot of it obviously just pours out. I just insert the tip, then squeeze some inside me, and use my fingers to spread it around and make sure it's getting to the most painful parts, then repeat until I've used most of it. After five minutes I have no pain. Seeing as how you have a different sort of pain than mine, you will probably have to use it differently. Just squeeze a little onto your fingers and apply it like that, then put the cap back on and keep the rest for later. It's just that for me I need a lot.

I only use it before penetration, I don't apply it twice daily like I was told to. I was told that after a few months of applying it twice a day my nerves would sort of just stop hurting. That was annoying an unhelpful though, so I stopped and now only use it when I need it.

I felt as you did and was very angry with everyone when I was first given it. I was prescribed 5% lidocaine ointment but was told by my GP that it was no longer available so was given Instillagel instead. When I went to the chemist to pick it up I was only given two single use syringes with no instructions. I was furious, because everything seemed like such a hassle. I have them on repeat prescription now and I order them in boxes of ten. I get two boxes at a time so I always have a good supply. The box comes with a small instruction leaflet, but I have found that I've pretty much gotten the hang of them through just using them however I like. Don't listen to that whole 'throw away after one use' thing, I have had no problems with just using a little at a time and keeping the rest for later.

I hope they work out well for you.

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Re: Lidocaine beginner question

Post  penfebruary on Wed Jan 11, 2012 8:06 pm

Thankyou so much for your quick responses guys, just been sitting here crying with frustration and so good to be able to talk about it with people who know what I'm talking about!
So just to clarify, if I manage to get it into some kind of more useable dispenser, it is fine to just use it as and when even when the syringe has been opened? Would just a small amount, eg a generous helping of toothpaste, be enough to tackle a flare up when I felt it come on? At the moment especially when I am not flared up I do not need to use it often and so it's much more helpful to me in a Vagisil-style form of use. Found loads on the internet about how great it would be for my complications with catheters aha, it is indeed a shame that they don't think it would be used for anything else!
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Re: Lidocaine beginner question

Post  penfebruary on Wed Jan 11, 2012 8:15 pm

Oh and no, the first thing I was prescribed was '2% lidocaine' which the pharmacy promptly told me is not a product but silly me, I trusted a doctor...
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Re: Lidocaine beginner question

Post  ButterflyLiz on Wed Jan 11, 2012 10:51 pm

Crying or Very sad Hugs, hun. I’m no doctor but that’s how I’ve always used it in the past. Tbh I think the amount to use will probably be trial & error, it’s different for all of us. I would guess as long as you get enough on there so that it reaches all the painful bits. I don’t understand what they’re doing with producing lidocaine. I used to get it as xylocaine, which is basically a trade name for 2% lidocaine, but then that stopped being produced & is now available elsewhere but not the UK. I tried the 5% ointment stuff but that burrrrnt. At the vulval pain conference I recently went to, it was mentioned that a company in the UK called Miller & Miller ARE making 2% lidocaine but I don’t know how this is helpful if you can’t get it anywhere! I’ve found their address online but not much else. I might write to them.
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Re: Lidocaine beginner question

Post  lolainslacks on Thu Jan 12, 2012 4:14 pm

It is totally okay to use it repeatedly after opening it! As long as you're keeping it in some kind of sealed container.

I don't have the kind of flare-ups you have, so I can't really help with that, except to tell you that when I was using it daily for relief from pain when sitting, I only used a small amount and it did remove the burning pain, keeping me pain free for hours. So I think your 'generous-squeeze-of-toothpaste' amount should be fine. It's all a case of trial and error with this stuff, because everyone is different. I only use a massive amount when there is going to be penetration, because that's what hurts me the most and I need to be super numb.

Good luck!

Oh and yes, doctors are totally useless. The amount of hassle I have beeen through trying to get the right medications has been ridiculous.

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Re: Lidocaine beginner question

Post  penfebruary on Tue Jan 17, 2012 11:50 pm

Extra question, are you meant to wash it off after having put it on or after a certain time? I don't have any advice to go on except the tiny pamphlet I got which didn't mention anything.... Also, sorry kind of switcheroo but is there anything on here or has anyone experienced a large change in symptoms? I'm used to burning/discomfort but over the past week I've mainly just had sore patches of skin around my vulva, which also feel sore to touch and I'm a bit weirded out.. a while ago I spent about a week or so with pelvic muscles suddenly as hard as steel and a full bladder feeling whenever I went but that went away as randomly as it came so I'm hoping this is just another one of these... it's not overly worse than my other/previous symptoms, I'm just a bit scared by the change.
Thanks
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Re: Lidocaine beginner question

Post  lolainslacks on Wed Jan 18, 2012 2:23 am

I can't help with the change in symptoms, because that's not something I have experienced, but I can say that you don't have to wash it off after a certain amount of time. In the beginning, as I mentioned before, I was told to apply it like an ointment twice a day, once in the morning and once in the afternoon, and just leave it on to do it's job. You can wipe away any excess, but you are generally meant to just leave it all on the painful areas. When I was using it in this way, I wouldn't wash it off until just before bed when I showered. The pain relief effect will wear off after a while, but it doesn't do any harm just sitting on your skin, you can leave it on as long as you have to.

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Re: Lidocaine beginner question

Post  JemimaSurrender on Wed Jan 18, 2012 12:19 pm

penfebruary wrote:Extra question, are you meant to wash it off after having put it on or after a certain time?
I understood that it was personal preference. I think if you're using it every day for personal comfort, then it doesn't matter if you wash it off or not.

But as my intention was just to use it for intercourse, I was told to wash it off so as a) it doesn't break the condom as sometimes it can react with it and b) so that my boyfriend doesn't get numb too!

I have a question for you experienced users!

How long would you say it lasts?

And... If you use it for intercourse, do you hurt after, once it's worn off?

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Re: Lidocaine beginner question

Post  lolainslacks on Wed Jan 18, 2012 4:00 pm

Wow, I have never heard that about washing it off. You mean you apply it, then wash it off after it starts to work, and then have sex? That sounds odd to me. It wouldn't numb your partner if you were wearing a condom and I've never heard about it affecting the condom. Hm. I'll have to ask my gyn about this.

As for pain once it wears off, yes, I have a ton of pain. I don't know how it will be for you, because every woman is different, but personally I am always in a lot of pain when it wears off after penetration. I think because my skin is irritated by all the rubbing and friction. My vulvodynia is provoked, I only have pain with contact, but after penetration when the lidocaine wears off the pain is constant and it hurts a lot to pee and sit. Which is awful but I'll put up with it if it means sex is possible. You might not have any pain though, it depends on your body.

One thing I have discovered though -- the last time, as soon as it wore off and I had the familiar pain, I applied some coconut oil. This was right before bed, and when I woke up in the morning the pain was gone. It still hurt a little when I went to the toilet but other than that I was in no pain at all. Coconut oil is really healing and wonderful for itches and pain. I apply it when I feel a little raw or scratchy and it always takes the edge off. I was so shocked that it worked for pain after penetration, because usually that pain lasts for like two days afterwards and is really excruciating. But this time the coconut oil soothed me back to good health and I had barely any pain at all. I really recommend it.

I'm not sure how long Instillagel keeps you numb for. When I was applying it as an ointment to relieve the burning I get from sitting, it would last a few hours. When I use it for penetration it seems to last for hours too, but weirdly it wears off as soon as the activity in that area stops -- it keeps me numb for as long as there is penetration, and then pretty much as soon as I stop it wears off. That's weird to me, I don't understand it, but that's how it is. I'd say it lasts between one and three hours depending on what you're using it for.

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Lidocaine 5%

Post  Loulou on Wed Jan 18, 2012 7:34 pm

[quote="lolainslacks"] I was prescribed 5% lidocaine ointment but was told by my GP that it was no longer available so was given Instillagel instead.

Hi I'm new to this forum and new to vulvodynia (just diagnosed yesterday!) so I'm still in a state of shock and trying to come to terms with what it will mean... Just to say that the 5% lidocaine ointment is available. My consultant prescribed it for me and although the local pharmacy had to order it as they said its not readily available I only had to wait a day and my hubby picked it up for me this morning (I'm practically housebound at the mo!)

Yes it did burn initially but that quickly wore off and all burning stopped - yay! I put it on about 12ish and I think its only now starting to wear off (though I haven't moved about much so may have worn off earlier??). It's my first time using it so I guess it will be trial and error as to how often I choose or need to use it.

btw - it's so nice to know I'm not alone with this. So glad you are all out there sharing!

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Re: Lidocaine beginner question

Post  lolainslacks on Wed Jan 18, 2012 8:56 pm

Where do you live? I live in Scotland and was told that they don't give it out to people anymore. So disappointing, I've been meaning to back to my GP and ask for more information because I don't understand why it's available everywhere else but not here.

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Alternative to Lidocaine

Post  Loulou on Wed Jan 18, 2012 9:50 pm

I live in the North East of England. However I've been looking on-line as I thought that if this works for me and I come to rely on it repeat prescriptions would start to be costly (though quite frankly it would be worth it). I did find something similar that looks like it can be bought on-line without a prescription - EMLA cream (seems to be used by tattooists!) - its has 2.5% lidocaine and also 2.5% Prilocaine in it (both are topical anaesthetics).

NB Obviously I haven't tried it myself yet due to having the Lidocaine so can't vouch for the product or the website but has anyone else tried this and can give some feedback??

As a new member today I can't post an external link for 7 days (??) but if you type in 'EMLA cream' to google you should find it. (btw I'm not linked to them in any way!! just something I found while searching)

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Re: Lidocaine beginner question

Post  penfebruary on Wed Jan 18, 2012 10:35 pm

Hi, thanks for all the info guys looks like this is a fairly useful thread.. Loloin what coconut oil do you get/ how easy is it to get hold of? I often feel not that bad but just like I am desperate for some sort of soothing oil so coconut oil sounds ideal post coitus. I will post a more detailed reply tomorrow, currently on a train journey home after a successful and pain free date (yay!) xx
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Re: Lidocaine beginner question

Post  lolainslacks on Thu Jan 19, 2012 4:31 am

Coconut oil can be found in any supermarket/grocery store I think. I get a jar from my local Asian food store. It is used in cooking and is very cheap. You could also try a local health food store, they are sure to have it. It is solid in the jar, but you can just scoop a little out and melt it in your fingers, it melts into an oil very easily. Or you could just use one clean finger to swirl it around inside the jar until your finger is oiled up. That's the easiest way to get a small amount out with no mess.

Coconut oil can also be used as a lubricant for sex, many women who are allergic to traditional lubricants use it in this way. And it can be used to ease the itching/pain from yeast infections. It really is a wonderfuul product, very soothing.


Last edited by lolainslacks on Thu Jan 19, 2012 3:38 pm; edited 1 time in total

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Re: Lidocaine beginner question

Post  JemimaSurrender on Thu Jan 19, 2012 2:47 pm

Does anyone have any other suggestions as to where to get some coconut oil from? I'm in the UK and struggling!

I can't find it on any supermarket websites. The only place I've found it in a pure form is Holland and Barrett, but it's quite expensive for something I've never tried before haha.

Boots have some too but it seems more like a moisturiser with other ingredients in so I'm a bit sceptical.

No worries if nobody knows, I'll keep hunting!

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Re: Lidocaine beginner question

Post  lolainslacks on Thu Jan 19, 2012 3:38 pm

You can get KTC pure coconut oil (which is the exact same kind I bought from the Asian supermarket) in Tesco for £1.69 and in Asda for £2.19.

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Re: Lidocaine beginner question

Post  JemimaSurrender on Thu Jan 19, 2012 3:59 pm

Oh great! I must have completely missed that.

I'll get on the case and check it out. Thank youuu.

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Re: Lidocaine beginner question

Post  JemimaSurrender on Thu Jan 19, 2012 4:39 pm

Okay, Next Question Time!

I tried the Instillagel last night. I wanted to give it a go by myself before I tried using it with my boyfriend. It kind of worked a bit, but I don't think I used even nearly enough. It seemed like a lot when I was putting it on, but I was told to use half of one of the syringes, and I probably used 1/5th maximum. It did seem to numb the outside bits quite well though.

So my question is... How on Earth do I get it to work further in! I tried really hard to make sure I got all the bits as I knew most of my pain is right around the ring, and the pain probably goes about half an inch inside too. I'm just a bit confused as to how to reach those bits without it just coming off my fingers around the edges.

Has anyone tried squirting it inside straight from the syringe?

Ooo maybe some of those pipettes you used to use in science class at school? But I don't want it to go too far in?

Ahhh it's so shit that you have to go through all this rubbish just to get some action! Haha.

Any suggestions would be greatly received guuuuuys!

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Re: Lidocaine beginner question

Post  lolainslacks on Thu Jan 19, 2012 9:19 pm

I had the same problem when I first started using it. I find that you have to use quite a lot really, which is super messy but that's the only way I get it to remove absolutely all of my pain.

Now here's some real TMI for you --

I insert the tip of the syringe, then press down on the plunger to squirt quite a lot inside myself, then whilst I'm pulling it out, I put my finger right over the entrance really quickily, before it all pours out, and I insert my finger and sort of push the gel into all of the little crevices that are the most painful for me. It will ooze all over the place and spill out, but if you squirt it inside yourself in this way and then insert a finger to press it where you need it to be, it will work much more effectively. I generally put a scrunched up pile of tissue underneath me so that any that pours out will be soaked up. And then I use more tissue to wipe away any excess once I'm done applying it.

I get 11ml syringes, and I use between half and three quarters. It's a lot, and it will really seem excessive when you're doing it for the first time, but it removes my pain completely so that penetration is totally painless. I use what's left over in the syringe to lubricate my dilators/whatever I'm inserting if things start to dry up.

It is such a hassle and a real mood-killer having to do all of this messy nonsense when other women can sleep with someone with no effort at all, but after so many years of pain I'm willing to do just about anything to feel better.

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Re: Lidocaine beginner question

Post  JemimaSurrender on Thu Jan 19, 2012 9:53 pm

That's really helpful, thank you so much!

Squirting inside definitely sounds like the best option. The only thing that bothers me is the idea of numbing all of my inside bits, but I'm guessing that it's too runny to even stay in one spot right inside for long enough, and that the majority will run back down towards the opening.

Regardless, this is progress! Even if everything ends up numb, I'd absolutely die just to have that intimacy with my boyfriend again haha!

I'll give it another go in a few days and see how I get on with it.

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Re: Lidocaine beginner question

Post  lolainslacks on Thu Jan 19, 2012 10:16 pm

The thing about this stuff is that it doesn't really numb you, it just takes the pain away. I don't know how that works, but I find that even though my pain is gone, I still totally have sensation, and penetration can feel really pleasurable. So it's not like you'll be unable to feel anything, you will still feel everything, just with no pain!

Good luck.

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Re: Lidocaine beginner question

Post  JemimaSurrender on Thu Jan 19, 2012 10:22 pm

I did wonder about that. I gave it a quick whirl yesterday and thought that if I prodded I wouldn't be able to feel anything. I assumed for a while it hadn't worked yet as I could still feel myself touching it, but it just didn't hurt anymore.

Thanks for that!

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Re: Lidocaine beginner question

Post  lolainslacks on Thu Jan 19, 2012 11:19 pm

No problem. c:
I'm glad it seems to be working for you, and I hope all goes well when you attempt to use it with your boyfriend. It has really been a miracle product and a lifesaver for me.

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