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Sat May 26, 2018 5:21 pm by Aquaben

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» Cleveland Clinic - Pain Management, Weston, FL
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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

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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 …

Comments: 4

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


The saga continues...

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The saga continues...

Post  noni on Thu Feb 17, 2011 9:50 pm

My derme appointment today:

Go in, im anxious....doc asks about my problem...I tell him. I put on that sheet thingy...another nurse comes in...he takes a look...asks where it hurts...I show him...they both say I look quote normal down there.

...this is doc number 6 or 7...Im not sure anymore...anyways after the usual awkward exam...

i tell him im on elavil...he tells me to continue taking it...I ask about topical options he says they are quote useless.

Then...I havent heard this one yet...and Im not attacking him...but he says that a good percentage of women who get Vulvodynia are actually depressed prior to getting it...He said that some people with this depresso/nerve predisposition get migraines, ulcers...or some of us vulvodynia.

Anyways...interesting theory....thoughts anyone?


Not really sure what the point of me posting this was...I guess share your story time?

Anyways...b;ah blah blah

Take care guys. Smile

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Re: The saga continues...

Post  Sarah001 on Thu Feb 17, 2011 9:57 pm

Hi noni, I can tell you that Dr Glazer has done research and found depression/anxiety/other mental issues are not the cause of vulvodynia and tend to occur as a result of it. That's just lazy doctors finding a polite way of telling us it's all in our minds which it's not. Bloody useless doctors. If depression was the cause then couselling or psychotherapy would alleviate the problem and again Dr Glazer did an experiment where one group of women went for "talk therapy" and it didn't alter their vulvar pain one bit. Google him and read his papers.
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Re: The saga continues...

Post  Sebby (Admin) on Thu Feb 17, 2011 10:02 pm

Hmmm im wondering where he got this theory from cos it sure aint in any vulvodynia literature I have read!

In the Vulvodynia Survival Guide book they did a survey (online) of many women and found that there was no link between any mental health issues and the onset of Vulvodynia

And I have not read anything else that disputes this research

I would beware that this is a typical way of telling a patient (its all in there heads!)

One Gynea told me it was all to do with anxiety. I told her that although this can make a condition worse that the research I had read did not support this. She then went on to tell me that many women are given antidepressants to help with vulval pain (this was her way of supporting her mental health theory) I had to remind her that acutally certain meds like ami acutally had an effect on nerve firing and this was way they were prescribed.





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Re: The saga continues...

Post  Sebby (Admin) on Thu Feb 17, 2011 10:03 pm


lol Sarah that was exactly the research I was talking about!

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Re: The saga continues...

Post  noni on Thu Feb 17, 2011 10:09 pm

Thanks for the feedback ladies.

I know, I know...I have been told before point blank its all in my head...this doc wasnt as direct, maybe?? I dunno....he wasnt rude when he said it...but whatever, another fruitless appointment...missed work because of it, etc, etc.

Im really at my wits end...


Is my pain dermatological, neurological...what is it??? Was it the antibiotics I was on before???


WTF!!!!!

Do I have some mutant fungus up my hoo-haa???

WTF!!!
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Re: The saga continues...

Post  Mouse on Thu Feb 17, 2011 10:17 pm

Hi Noni, this kind of shit makes me fucken angry. What a lazy bastard!

Could you print out some info and send it to the wanker so the next person through the door doesn't have to pay for that sterling advice.

I don't have depression. Nearly went there after the V show started though. It's frightening that these people are being believed.... by less cynical people than us.

Have you tried the yeast diet Noni? If that's part of your problem you should starve the sucker. There's a woman on the other V FB page who cured herself through diet modification she says she can eat what she wants now. So it's not forever.

Virtual punch in the face for that wanker!

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Re: The saga continues...

Post  noni on Thu Feb 17, 2011 10:22 pm

I just dont know anymore...

Are there any answers out there?

Im sick of being dismissed all the time...getting no help.

Oh...PS: This nurse recommended baths...hahaha. (we have all heard this) but not sitz baths...but instead tea baths...omg.

I would have stuck a tea bag up my hoo ha ages ago....
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Re: The saga continues...

Post  Sebby (Admin) on Thu Feb 17, 2011 10:23 pm

I did that! I photocopied Glazer's research and highlighted the relevant bits in bright yellow and sent it to that stupid gynae!
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Re: The saga continues...

Post  Mouse on Thu Feb 17, 2011 10:35 pm

There you go!!! Do it!!!

You know I have CD. Well my big girl in London is being tested at the moment, it is hereditary. She knows from the info I've sent her they have ordered the wrong blood tests. There is a Dr here named Rodney Ford who says it's our responsibility to educate the medical profession. Just keep at them until they catch up. They can't know everything. Even my GP says I know more about CD than she does. We have a vested interest to find answers. They are pill pushers. They reason CD is not a priority and massively underdiagnosed (average is 13 years) is there is no money to be made, no drugs to push.

Noni, I'm making my own way with this. I've given up with the specialist. I can't see the point in going back. I'm trying a more holistic approach to heal my body. Some days I'm committed and other days I should be committed but I want control. Ummm this is why I struggled with the drugs, the brain wouldn't give in :\ Anyway I've been smiling lately (yes I know Cat Stevens) I have no idea why. Something is working.

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Re: The saga continues...

Post  noni on Thu Feb 17, 2011 10:42 pm

Thanks for the support ladies

So much appreciated.

I know that I cant put all my hopes in a specialist...its up to me...its my body...problem is I dunno how to fix this.

Its so stressful some days....
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Re: The saga continues...

Post  Mouse on Thu Feb 17, 2011 11:03 pm

Ok just start with simple things... read every packet and be aware of every chemical that passes your lips. Eat naturally and drink loads of water. Aim for quality sleep so have a night time routine where you wind down, make your bedroom a comfortable haven. Stay away from bright light, that kills the melatonin you need to nod off. Breath deeply and nourish your body. Concentrate on the breath in and the breath out, it's hard to think of anything negative while you do this. If thoughts creep in acknowledge them and let them go. Oww try this one.. breath in and on the out breath smile. I can't even think about that without smiling.

Take time for yourself and do something you enjoy every day. Smile at people, they will either run in fright or smile back. That alone can be empowering, you might be the only person that smiles at that person for the whole day and they might pay it forward. Ok I'm not about to break into song and dance around the fire but you get my drift. If you make your mind stronger hopefully it will make you strong enough to cope and have the energy to hunt down the answer. It's a work in progress. Be kind to yourself.


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Calm is key, but venting is great!

Post  saskatownv on Fri Feb 18, 2011 4:44 pm

Fuck that guy! what an ass! Ive come across some lovely Drs in my time with this.

Even my own Aunt who in a gyno in a different country had the guts to tell my father that it was all in my head! I sent him that article from the Globe and Mail that was posted here. I told him to send it to her. He didnt have the balls, but now he doesnt listen to her anymore. Thank God!

Keep on truckin with trying to find answers! It is up to us as individuals I know. The sooner you realize that........well.......the less depressed you get after each Drs visit!

Good luck!
Sally

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Re: The saga continues...

Post  CamperUK on Fri Feb 18, 2011 6:30 pm

Mouse wrote:Take time for yourself and do something you enjoy every day. Smile at people, they will either run in fright or smile back. That alone can be empowering, you might be the only person that smiles at that person for the whole day and they might pay it forward. Ok I'm not about to break into song and dance around the fire but you get my drift. If you make your mind stronger hopefully it will make you strong enough to cope and have the energy to hunt down the answer. It's a work in progress. Be kind to yourself.


I like this thought process and admire your outlook.
Loving your work, Mouse! Camper x

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Re: The saga continues...

Post  noni on Sat Feb 19, 2011 12:02 am

Thanks so much ladies

...today...after the elavil wore off...i started to think...yeah this doc totally insinuated that Im a huge depresso!!!

WTF!
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Re: The saga continues...

Post  Mouse on Sat Feb 19, 2011 12:37 am

Noni, Sally is right, he is a fucker!

Thanks Miss camper, I'm trying for a new zen me. Instead of a crazed booze hag... I can't drink much these days it always leads to trouble.

Sally, do you have trouble letting go of what your Aunt said? It's harsh when someone in your own family is that unhelpful. I still feel the need to educate every stupid person I've come across. My brain is saying "let it go woman". One thing I have learned in this process is that some Drs are just too lazy or stupid to keep up with the research which makes them dangerous. I think it probably is up to us. My specialist suggested the low oxalate diet so I researched and asked her if I should get tested to see if that is a problem first... she replied there is no test... well yes there is, there would be a high concentration of oxalate crystal in my pee. I'm not taking on any more dietary restrictions than I already have at the moment. She is one of the good guys however so I'm not holding that against her. My original gynaecologist on the other hand has no idea what vulvodynia is, WTF??? Mine triggered after surgery that she performed and she said she had done bigger surgeries without that result and generally just ignored the problem while I went to crzy town ggrrrr. I sent her loads of research which she ignored as well. I have a lot of trouble accepting that it wouldn't make them the least bit curious and open a bloody book. hahhaaa that's me on my soapbox for the afternoon.

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Re: The saga continues...

Post  noni on Sat Feb 19, 2011 12:58 pm

yea...it really does seem its all up to us.
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Re: The saga continues...

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