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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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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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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.

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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 …

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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 …

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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 …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

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you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

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Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

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New to this forum :)

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New to this forum :)

Post  kt031 on Mon Apr 04, 2011 2:41 am

Hi I'm a 22 year old living in Australia.
I have suffered Vulvodynia for years now..Feeling like nothing helps and it's hard to think that things will get better,because I feel like I'm not making any progress!
But have to try be positive I think !I'm finding that epsom salt baths,are the only thing that relieves my pain!
I see a physio for my vulvodynia and I can't really say it's helping,but it's better to try than not try at all! Smile

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Re: New to this forum :)

Post  noni on Mon Apr 04, 2011 2:55 am

Hey and welcome!!

»Have alook around!

Noni
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Re: New to this forum :)

Post  Aussie on Tue Apr 05, 2011 5:34 am

Hey,

I live in Australia and also 22 Smile I have been suffering for 9/10 months though.

How long have you been seeing a physio for? It has taken me 6 months to see any kind of result. Have you been taught to breathe through your tummy not your chest, relaxes your body all over so good for pelvic floor tension. What kind of v do you have and how did it start?

If I can help in any way let me know.

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Re: New to this forum :)

Post  Mouse on Tue Apr 05, 2011 5:36 am

Owww Clare I want to learn tummy breathing!

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Re: New to this forum :)

Post  Sarah001 on Tue Apr 05, 2011 10:22 am

Hi kt031 and welcome to the forum. Have a read through some of our posts, some of them make sense honest!

Claire I'm really glad you mentioned breathing, I've been droning on about it for some time now but as I was the only one it didn't get much interest! I'm an upper chest breather unless I think about it and it really does help to stop doing that and direct the air to your abdomen or at least the sides and back of the ribcage. I'm so glad someone else is doing the breathing training!
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Re: New to this forum :)

Post  Sebby (Admin) on Tue Apr 05, 2011 5:52 pm


Hi there and welcome to the forum

I might try those bath salts!

Im doing pelvic floor biofeedback but will be months before I see any result. Am on Pregabalin 300mg and find that my flare ups are shorter which im pleased about Smile

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Re: New to this forum :)

Post  Aussie on Wed Apr 06, 2011 3:57 am

Sarah,

Well if you can relax your body it gives your pelvic floor a better shot at doing the same. I just find it better all round. I do it before I get in my car, open a door, go to the toilet, get into bed etc etc...just little triggers to remind me during the day. I was getting a lot of anxiety at the start of all this so breathing this way alone has completely eliminated that. I recommend it to everyone with pelvic floor problems.

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Re: New to this forum :)

Post  lisa98 on Wed Apr 06, 2011 9:21 am

Im also in Australia (Sydney) and have had this for years. What part of aus are you from?

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Re: New to this forum :)

Post  Sarah001 on Wed Apr 06, 2011 4:12 pm

I remind myself to breathe properly every time I catch myself upper chest breathing, which is alot! Exactly the same as relaxing the pelvic floor every time I find myself clenching, which is also alot! Rolling Eyes It does help decrease the pain though if I do it enough, just wish I could get my silly brain to understand it's supposed to do it all the time.

I tried using Epsom salts in the bath but it didn't help me and made my skin alot drier so it's something to watch out for Sebby if you do try them. Wink
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Re: New to this forum :)

Post  ADHESIONSTOO on Thu Apr 07, 2011 6:19 am

I too thought that after trying epsom salt baths that I sensed more irritation. I did it with a sitz bath and also wonder whether it was a good idea to have both my back and front parts sharing such a small amount of water unless you had just taken a shower!

I did the sitz bath to avoid having to fill a big tub- especially since I prefer to shower. However, I did just recently do a full tub soak and I felt that although it didn't begin to reverse the issue, overall I felt better when I was done. The sitz bath idea sounded good at first but at least in my case I think I need the full deal to get even any minor sense of relief.

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Re: New to this forum :)

Post  kt031 on Thu Apr 07, 2011 7:16 am

Hey thank you for the welcomes Smile.
I'm from Melbourne lisa98 how about you?
And Claire I've been seeing my physio for over a year now and I haven't seen much results..it took ages for me just to get in to see the physio and now that I've been seeing one,it hasn't made much of a difference..I have to use a dilator and I find it hard even doing pelvic floor exercises because I end up in more pain afterwards...And I have been told to breath from my stomach but I still can't do it,I have anxiety so I find it extremely hard to breath from my stomach,I'm so used to breathing from my chest lol.
ADHESIONSTOO I'm suprised that you got irritation from the epsom salts, everyone is different of course!The epsom salts sometimes help me,not always!It's strange how some days my pain is worse than other days and sometimes the epsom salts work and sometimes it doesn't...I wish there was an answer!So frustrating!!!

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Re: New to this forum :)

Post  Zazu on Thu Apr 07, 2011 12:31 pm

Hi there,
Has anyone else tried colloidal oatmeal baths? That's what I've found works better than anything else when I'm having a flare up. I usually buy the generic version at the drug store but Aveeno is the most common brand. It smells like you're taking a bath in your breakfast bowl of oatmeal, but feels really good and is moisturizing too - nice for the cold months Very Happy I also found that Epsom salts were really irritating.

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Re: New to this forum :)

Post  Sebby (Admin) on Thu Apr 07, 2011 6:42 pm


I have read about the colloidal oatmeal baths. Should you just use them for flare ups? I like that Aveeno do a brand, Im a big fan of their body cream Smile

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Re: New to this forum :)

Post  Zazu on Fri Apr 08, 2011 6:17 pm

I really like Aveeno too. You can use the oatmeal bath packets multiple times a day every day- I think it is usually used for skin irritations like heat rash or other. It's really gentle and is 100% oatmeal so nothing bad. It works so well for me- if I'm having any irritation it clears it up for me.

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Re: New to this forum :)

Post  Sebby (Admin) on Mon Apr 11, 2011 7:25 pm


Thanks Zazu...I know whats on my shopping list tomorrow!! Smile

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Re: New to this forum :)

Post  Aussie on Tue Apr 12, 2011 6:22 am

I Put aveeno fragrence free in the bath when I want one, still makes bubbles so I feel nice and doesn't irritate.

Perhaps your physio is taking the rong approach. I have just found that I have been doing the wrong thing for my pelvic floor for months. I saw one person who's focus was purely on stretching and relaxing the muscles. By coincidence I dislocated my knee and didnt have time to do the stretches. It was only then I realised that the burning had stopped. (the burning usually sets in after I do my stretches in the morning, sets in for the day) I thought this was part of healing.

I have since seen another physio who told me she thought the stretches were irritating my vulva so to stop completely but use tens. When she tested my trigger points sure enough they were way better than the prevous week where I had done stretches. She said my pelvic floor isnt so tight, just full of trigger pionts from when it was tight (they have built up) but it is also weak (hence the bladder urgancy/frequency) so I am now doing 5secconds very gentle contraction and 10 secconds relax + let go. Things seem to be improving even more.

So it may be worth getting checked by a number of physios for opinions becauase this thing really isnt a one size fits all situation. Vulvodynia can't be treated with one thing. That was my problem, the person I went to first treated all patients the same way, when in actual fact stretching more than I needed to has resulted in pelvic floor weakness, so it's still spazming but it doesn't need to be stretched or relaxed too much anymore, we now need to strengthen the muscles so they can stop smazming.

Hope this helps.

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Re: New to this forum :)

Post  Sarah001 on Tue Apr 12, 2011 12:24 pm

I'm going to start calling you my "V twin" Claire! I have the same issue with stretching the pelvic floor, can make things alot worse and I also find my SI joints completely destabilise if I do it too much. My physio gave me a small amount of kegels to do each day right from the start and I went astray a bit by doing the Glazer method which was a big mistake for me as I can't release the pelvic floor in between contractions so I made matters alot worse. I'm now back to my few contract relaxes the physio thought were the right amount and have learnt my lesson about doing too much stretching or contracting! Embarassed
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Re: New to this forum :)

Post  Mouse on Wed Apr 13, 2011 9:46 am

Claire, interesting you say that the burning stopped when your knee hurt. I found when my sciatic nerve was bad the V took a back seat. It seems somewhere else is getting the attention? My sciatic nerve is behaving and I have weird sensations creeping back in. But then I've started working again so it could be stress.... and coffee??? Who knows!

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Re: New to this forum :)

Post  Sarah001 on Wed Apr 13, 2011 11:28 am

It's the body's way of prioritising pain etc. Chronic pain gets a back seat when something acute crops up so the body sends the cells there instead rather than at the site of chronic pain. It's the same if you come down with say a chest infection and feel dreadful, the V being chronic takes a back seat until the acute threat is dealt with then the pain returns full force. If my SI joints lock it's excrutiating so my V is very mild until I get them moving again.
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Re: New to this forum :)

Post  Zazu on Wed Apr 13, 2011 1:55 pm

That's so interesting Sarah! Recently my back has been doing a lot better (except for today, grrrrr) and just the last three or four days the generalized irritation has gotten a lot worse. I did just get put on gabapentin last week (but is it even possible that this could make the irritation worse??) and changed laundry detergent (but from one free of dyes/perfumes/etc. to another one that claims the same) so this explanation might make the most amount of sense.

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Re: New to this forum :)

Post  Louise on Wed Apr 13, 2011 6:52 pm

Hi,

I'm from oz too, just to let you know I've recently been to the physio who is teaching me to 'relax' and breathe properly she also told me to pay special attention to your posture, bad posture causes you to slouch and in effect pushes down on your pelvic floor (I thought that was interesting). I'm starting yoga next week which will assist in the whole relaxation/breathing side of things. I've also being trying to cut out sugar which has helped a lot however I stilll can't give up coffee! I was prescribed ami but am trying to take the 'natural' approach..

Good luck & you're not alone x Very Happy

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Re: New to this forum :)

Post  Sarah001 on Thu Apr 14, 2011 1:13 pm

Funny you should say that Zazu, when I first started on the Lyrica (anti-convulsant like Gaba) I thought it was making my V worse too, I seemed to have a real increase in symptoms for a few weeks then it died down again. I googled it at the time and found a few people saying the same thing and the advice being give it more time which is what I did. I don't know why it does it, maybe because it's altering the pain signals and it takes time for the body to adjust? Anyway, it's not making things worse now.
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Re: New to this forum :)

Post  Zazu on Thu Apr 14, 2011 6:23 pm

Thanks Sarah, that's really reassuring to hear - I've been debating whether I should stay on it or not, but I really don't want to go off of it just yet. It just feels like there hasn't really been enough time to see whether it will work for me or not. Did you find that it made your back pain any worse? I also have SI joint pain and starting yesterday have had a flare up after three weeks of (finally) being good. Maybe it'll be like the V and just die down after awhile.

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Re: New to this forum :)

Post  Sarah001 on Thu Apr 14, 2011 6:59 pm

My SI joints are bad all the time because I don't have proper ligament strength around them but I have noticed they are often worse since I started settling into the Lyrica and I think it's because I don't pay as much attention to how I move etc so stress them worse than I did previously. When my V started I'd just been doing core stability exercises with a physio who was pushing me too fast and giving exercises way beyond my capabilities which according to my women's health physio is something she hears alot from women with V and pelvic floor dysfunction, did that happen with you at all? There's a therapist called Leon Chaitow who has published articles about SI joint dysfunction, pelvic floor problems and vulvar problems and he believes they are all caused by the same thing which is faulty breathing patterns and failed load transfer through the SI joints which is spot on for me!
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Re: New to this forum :)

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