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Today at 5:05 am by SinclairSassy

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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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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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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 …

Comments: 6

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 …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


Trigger point work at home

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Trigger point work at home

Post  lolainslacks on Wed Oct 26, 2011 8:58 pm

I have my very first physio appointment today, and I was terrified, because I new there would be an examination and they have always been excruciating for me.

However, it was so wonderful. My therapist is the nicest woman I have ever spoken to about this, so so lovely and understanding. And she asked if I was ready for the exam and said that if I wasn't ready yet we could wait until a later appointment, but even though I knew it would hurt I was eager to get started.

The insertion did hurt to begin with, but she went so slowly and was always asking if I wanted her to stop. The exercises were fine. She stretched each side. The first side didn't hurt at all, which amazed me. After her finger had been in me for a few minutes, and after she had begun stretching me, everything stopped hurting. The other side hurt quite a bit though, and as expected there was a lot of pain when she was pulling out.

Anyway, she told me that I shouuld mimic what she did, by stretching the muscles gently at each side, 2-3 times a day. She said to use my thumb and to stand over the toilet with one leg on the seat. I was just wondering if this is how others do it? And if not, what are some other methods? What do you find most comfortable?

Also, I was wondering what the immediate effects of this kind of exercise are? Because once I left, for a few hours afterwards my pelvic floor muscles felt so open and relaxed. I am not aware of tensing when I'm not doing anything, like just walking or sitting around, but I was aware of a really relaxed feeling today, like I had more control than usual, which suggests to me that perhaps I tense subconsciously all the time? And maybe the work we did loosened them up for a while? But I don't know if maybe that's just in my head as a sort of 'placebo effect'.

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Re: Trigger point work at home

Post  Sarah001 on Thu Oct 27, 2011 11:31 am

Hi there, I use the opposite thumbs in the bath and stretch them that way, you have to breathe into the pelvic floor sometimes to get any release though. You could also invest in a set of dilators and use the smaller ones as a finger extension so just use those to stretch with. You probably are clenching all the time without realising it, most of us with V are! I do it and it drastically increases my pain whereas if I can keep them relaxed for a few days in a row it drastically decreases my pain. You could prop yourself up on lots of pillows and do it laid on the bed too, I avoid the standing positions because I use alot of muscle tension when standing so get on better with laying down. Whatever works for you really. It's funny you said removing her finger hurt you, I used to find the sensor wasn't too bad going in but horrendous to get out because my muscles had clamped round it so it made me really sore removing it. Don't forget to breathe into the abdomen to help the muscles relax. Let us know how you get on.
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Re: Trigger point work at home

Post  Rose86 on Thu Oct 27, 2011 7:11 pm

I've started doing some stretching using my fingers and the smallest dilator. I do it laying on my back with my legs on some cushions. I've noticed that there's a lot more pain on the left than the right, both internally and in the vestibule. I've not really found any trigger points, but definitely tight muscles. I overdid it last week with the stretching and dilators and had to have a few days off to recover as things were pretty sore. Maybe I should have pushed through the pain though because when I tried again the muscles were very tight. Is it better to rest it when it hurts more or push through the pain? Just wondering what your physios have said about that?

I was actually wondering if anyone can recommend a good physio (in the UK)? I'm in the south, but i'll travel to find one at least for a decent assessment of my pelvic floor muscles.

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Re: Trigger point work at home

Post  lolainslacks on Thu Oct 27, 2011 11:37 pm

Thanks for the tips guys. I remember everything she told me about the muscles and trigger points, but when I try to do it myself I don't really know where to work. I can't feel just one specific 'trigger point' that hurts so I can't tell if my finger is in the right place. Is it okay to just push my entire finger against each side to stretch it as a whole, or does it really have to be touching a specific place?

I'd be interested to know the answer to your question too, Rose86, because when I use my dilators sometimes I push myself too far and I have pain for a day or two. And because of the pain I avoid any penetration, which sets me back because when I try again I'm tightened up. I always wonder if maybe I should just keep working even though it hurts, or wait until it's better.

I recall reading something online about a women with vulvodynia who made sure she massaged her most painful area daily, even when it hurt most, and she found that doing this really helped, because even on days when you have pain, the area still needs attention. But that wasn't medical advice, so I don't know how well it applies to other women.

I have another appointment next week, so if no-one else can answer I'll ask my physiotherapist about it.

I can't recommend a therapist I'm afraid, because I live in Scotland which is probably no use for you.

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Re: Trigger point work at home

Post  Sarah001 on Fri Oct 28, 2011 8:20 pm

Wherever you find tight muscles there's trigger points in there somewhere, they don't necessarily have to refer pain though just be the sorest areas to touch. I can feel lumps where mine are and I have some humdingers that refer into the labia majora, the vestibule and hips and down the side of my sacrum but others are sore with no referral. The ones that refer are active and the ones that don't latent but both need to be deactivated to allow the muscles to relax.

I also sometimes overdo it and make myself really sore, if you make a muscle really hurt that way it spasms and clamps up to protect the painful area which is why it makes them tighter if you overdo it. Go gently and see how much you can stand withot doing this, pushing through the pain and making yourself even more sore isn't the way forward. On the other hand if you find an active trigger point you may have to hold pressure on it several times before it stops referring so that's ok.

Just stretching the muscles in general will help short term but the trigger points also need to be gone to allow the muscle to reach it's normal length so it is a good thing to do but you also need to press different areas of the muscles until you find those knots. It's the same as any muscle really, aggravating them won't help but carefully considered massage will. I totally get how easy it is to overdo it and if I do I use arnica ointment to calm things down, if I've really flared things up I will sometimes use hydrocortisone ointment for 1 night only to calm down the extra redness and inflammation. And don't forget the breathing into the abdomen, it helps things relax and minimises clenching.
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Re: Trigger point work at home

Post  Rose86 on Sat Oct 29, 2011 12:40 pm

Thanks for the advice Sarah. Though rather than soreness, this time i've developed unbearable itching! Kept waking me up all night and I was dreaming about it! I don't suffer from itching as a usual symptom, so i'm wondering if it's just an effect of things being more moist than usual from the lubricant I use with the dilators. Or I suppose it could be the start of a yeast infection. Really hope not though! Either way I can't use my dilators with this much itching! Ahhh! ITCHING!

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Re: Trigger point work at home

Post  Sarah001 on Tue Nov 01, 2011 3:10 pm

Could be the lubricant, could be extra moisture as you say and could be you've overdone it and damaged tissue a bit which is healing. Could also be yeast of course! Hopefully your itching has gone by now.
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Re: Trigger point work at home

Post  Rose86 on Tue Nov 01, 2011 6:24 pm

Yep, it was yeast! Do you happen to know if there are lubricants available that have a PH balance similar the vagina? I currently use Sylk, and it smells rather sweet, so i'm wondering if it has something sugary in it that the yeast likes? I have been using it for weeks though and this is the first infection, so it could just be one of those things. So now things are a bit sore and in recovery before I start the PT again. Isn't it fun being a woman! Men don't know how easy they have it!

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Re: Trigger point work at home

Post  Sarah001 on Tue Nov 01, 2011 7:43 pm

I certainly do, Biofem gel is ph perfect for the vagina, it's cheap and readily available online, I'm not sure which country you're in but here in the UK it's very easy to obtain from any chemist too.
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Re: Trigger point work at home

Post  Rose86 on Thu Nov 03, 2011 9:38 pm

Thanks Sarah, yeah I am in the UK. I've ordered some of that, and also some lubricant that says it has no glycerin in it, so hopefully that will be better. It's annoying though. To improve we are supposed to do dilator work everyday, but the added moisture from doing it can cause yeast infections! So now it means I haven't done any for a week and will have lost any gains i'd been making! Oh and last week my GP, who had been really good up to this point, was a bit grumpy when I saw her and said that i'll probably have this my whole life and need to start trying to accept it, rather than searching for a cure. Oh and that the pain is probably psychological. I did get a bit upset afterwards, but i'm glad i've read about so many other women having this experience and then going on to find treatments that help them. I wanted to get my hormone levels tested because of Goldstein's work, just even to rule it out as a cause, and although she agreed to test them, she was moaning about budgets and how much blood tests cost etc, and how it was coming out of her patients' budget! WTF! Bloody NHS! Ok, rant over. We've all been through this I know! Onwards and upwards.

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Re: Trigger point work at home

Post  lolainslacks on Thu Nov 03, 2011 11:57 pm

Don't let GPs like that get you down. It's surprising how many specialists (FEMALE specialists no less) can be be so insensitive and clueless about this. I've seen countless GPs who have told me the pain isn't real it's just psychological. Even back when the pain was coming from my abnormally thick hymen that had to be surgically removed. Not one of them spotted that. And I once saw a psychosexual therapist who told me that I should go out and have sex with someone I don't care about, simply to get sex out of the way. After only speaking to her for five minutes, she concluded that I am repressed and childish, and that having sex with someone will allow me to finally 'grow up'. I mean, there are so many WTFs about that advice it's unreal. And I cried for an hour after she said that. It can make you feel like no-one wants to help andd you're dealing with this alone.

Anyway, good luck with the new lubricants. Dilator work every single day can be tough.

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Re: Trigger point work at home

Post  Sarah001 on Fri Nov 04, 2011 12:51 pm

Funny you two are having doctor problems too, my dr has been really good about this and recently said she would try and refer me to a WH physio on the NHS. The problem where I live is most referrals end up at our small hospital where there isn't the right kind of people and not at the large hospital 30 miles away where I need to be. Anyway, I received a letter yesterday to go to the small local hospital and the name of the physio plus a load of info about stress incontinence which confused me. I rang and spoke to the receptionist hoping to get a chat with the physio about it all and the receptionist read me the letter my GP had sent which said I had a lax pelvic floor and stress incontinence! The complete opposite of what I really have for heavens sake!! I said I'd never mentioned anything about a lax pelvic floor and I'm really upset my dr hasn't listened to a word I've said because she seemed good. I'm going to the appointment anyway even though they don't have biofeedback machines at that hospital because apparently if this physio can't help me she can send me on to the other hospital who do have all the equipment. My appointment is next Thursday so I'll let you know how it goes. I ask you though, stress incontinenece for fuck's sake??!!

On the plus side this physio is apparently very good with SI problems which I'm struggling with as well so she might be able to help me a bit. I daren't raise my hopes though, I've had 7 years of physio for my SI problems and come out no better and with V on top of everything else, oh and minus about 12 grand too of course. Useless physios.
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