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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 …

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 …

Comments: 4

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


Had nerve block...

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Had nerve block...

Post  Sebby (Admin) on Tue Dec 28, 2010 11:46 pm


Hi guys I had my nerve block on 23rd December.

I was so scared but it was ok cos they sedated me!! Smile I didnt feel the needle go in and only felt sum sore pressure when they hit the nerves inside so only said 'shit' 3 times and then carried on giggling! so I would say to anyone dont worry its so not as painful as you would imagine, I would rather get that done than a smear test any day!!

I was on my period at the time and hence got a really bad Vulvodynia flare up. Ugh! so was in such pain anyway. I read that it can make the symptoms temporarily worse which I believe it did but it could have just been cos I was on my period..

Anyway the pain is less at the mo but I still dont know if its the block getting to work or cos Im not on my period now and could take those damn sanitary towels out!

I am still gonna get referred for physical therapy and also order a home biofeedback kit oh and strangely enough have found some relief from using nappy cream!!

I will see how I am next week if the block dont work i'll try the pudendal nerve block and carry on with the physio stuff and so on and so on...

Am not too impressed at the moment but I will keep you guys updated..

Godbless and hope you all had a good xmas

Sebby
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Re: Had nerve block...

Post  Paula on Tue Mar 08, 2011 7:41 pm

Hi

My 70 year old mum went in for a nerve block yesterday, no sedation , no nothing, she screamed and cried in pain, 24 hours on she is in immense pain, we had all our hopes pinned on this, i am starting to wander if there is something else wrong down below and i am tempted to ask for a transvaginal scan, glad to hear yours did not hurt that much, dont understand why hers did??, Are they supposed to work straight away and first time, I am so sad for her

Forever hopeful

Paula

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Re: Had nerve block...

Post  Sebby (Admin) on Tue Mar 08, 2011 9:41 pm


Hi Paula and welcome to the forum

Did they give the nerve block in the back? I can't believe that they gave no sedation! You need to make a complaint! My aunty also had a nerve block in the back for back pain and she said it was fine. What happened to your mum does not sound right and the hospital need to investigate as they cant expect patients to go through that!

The block didnt work for me but it did not cause any more pain. They said it could take a couple of days to notice an effect but I didnt feel any better

Do complain though and wishing your mum feels better soon






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Re: Had nerve block...

Post  Paula on Wed Mar 09, 2011 9:16 am

Hi Sebby

Thanks for your reply

She had the nerve block done vaginally, We were so sure that it would work, feel completely deflated that there does not seem to be much difference!

She says she cant live like this anymore?

Paula

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Re: Had nerve block...

Post  Sarah001 on Wed Mar 09, 2011 1:47 pm

Hi Paula, I'm guessing it was a pudendal nerve block then if it was done vaginally? Have they tested your Mum's hormones? At 70 she's bound to be low in oestrogen which can cause vulvar pain. Also have they made sure she doesn't have a prolapse? That can also cause vulvodynia and might explain why the nerve block was so painful. I really think they should at least rule those 2 things out and if there's visible skin problems a referral to a dermatologist who specialises in vulvar skin conditions would be a good idea as older ladies are more prone to skin conditions.
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Re: Had nerve block...

Post  Paula on Wed Mar 09, 2011 4:53 pm

Thanks for your reply

Will speak to the gp about Low oestrogen, she was checked 2 years ago for prolapse, because that is what we first thought this was, but thanks for info any advice is greatley appreciated

Thanks Paula

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Re: Had nerve block...

Post  Mouse on Wed Mar 09, 2011 8:19 pm

Hey Paula,

I'm so sorry your Mum is in such pain. What a horrible treatment. Do you think they knew what they were bloody doing?

I hope she is feeling better now. She's lucky to have you taking care of her.

Take care
Vicki

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Re: Had nerve block...

Post  Sebby (Admin) on Wed Mar 09, 2011 9:34 pm


Take a look at this site if the doctors are thinking it has something to do with the Pudendal nerve

http://www.pudendal.info/node/7

It also talks about Physical Therapy...has your mum had any PT?

Im doing biofeedback home training using Dr Glazer's protocol

http://www.vulvodynia.com/ - take a look at Dr Glazer's site and also at my link to do with the video consultation I had with him

http://vulvodyniasupport.forumotion.net/t276-dr-glazer-video-consultation-review

This could be something your mum could look into..I will have to wait a few months to know if anything is helping and the protocol does involve two 20 minute sessions per day of pelvic floor exercises and inserting a vaginal sensor..I have found it was not as bad as I first thought it would be. It does not cause me to have more pain.

The advice he did give me was everytime I urinate I have to spray the vulval area with water, pat dry and apply vaseline. I have only been doing this for a week and a half but it has helped

Also when she is indoors, wear no knickers and just a skirt/dress! This is fantastic for me

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Re: Had nerve block...

Post  Paula on Fri Mar 11, 2011 11:11 pm

Thanks for all your replies, this is just the worse thing to have, as nothing seems to make it go away, my mum is on so many drugs now and still no reprieve, 5 days down the line the block has not made any difference, she couldnt go through the pain to try it again she still has to stand to eat her tea and still in just as much pain, when i get back from hols next week, i am going to ask to have her oestrogen levels checked, an internal transvaginal scan, which amazes me has never been offered to make sure nothing else is going on down there, i find it so hard to believe that nothing helps?

Paula

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Re: Had nerve block...

Post  noni on Sat Mar 12, 2011 1:02 am

Paula i`m so sorry to hear about what your mother has been going through.

Have you had her hormone levels checked? I would look into that, especially if shes older.

Good luck, I hope you find answers soon.

Noni
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Re: Had nerve block...

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