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Yesterday at 7:34 pm by Jo44

» Weird Reactions to Natural Remedies
Yesterday at 4:38 pm by emalita

» It feels like I’m going to have pain forever
Mon Jul 16, 2018 12:11 pm by mhhh

» It feels like I’m going to have pain forever
Mon Jul 16, 2018 10:01 am by dunkelma

» It feels like I’m going to have pain forever
Mon Jul 16, 2018 8:51 am by dunkelma

» Honey decreased my pain considerably!
Sun Jul 15, 2018 12:53 pm by mhhh

» Birth control pills can cause vestibulitis
Sun Jul 15, 2018 1:15 am by MDias

» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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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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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 1

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 …

Comments: 5

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.

Comments: 1

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 …

Comments: 0

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

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 …

Comments: 0


Happy Birthday to me!

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Happy Birthday to me!

Post  Mouse on Wed Sep 22, 2010 7:44 am

Well this week I'm getting another birthday. Besides the numbers getting big and scarey (beats the alternative of course) I'm not getting that loving feeling. My husband has been pestering me for present ideas - his training is complete in that area... I just don't give a crap. I don't want parcels (I may change my mind) I just want the achey bits to stop aching so I don't have to double my dose of amitriptylene pale

It took a couple of weeks to get over the dizziness, headaches and spaced out feeling. I'm still as grouchy as a bear. And now I have to do it all over again.

Whinge over!

Mouse

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Re: Happy Birthday to me!

Post  jules on Sat Sep 25, 2010 5:35 pm

Sorry you're not celebrating your birthday w/out pain. it sounds like you are down and that is to be expected. the idea of sex and wearing sexy things can actually be pretty stressful. have you considered trying something other than Amitrip.? if you are already on it and double it, i would think you probably would not experience the side effects since your body has already adjusted to the meds you're on. i have increased my meds (neurontin and lyrica a few times w/ no added side effects.) my experience w/ meds has been that you experience the side effects when first going on. i have not tried Amitrip for this disorder. however, i tried it several years ago for headaches. i felt like i was a zombie and in a dream for two weeks. i could barely do my job. i went off of it right away. i never had that problem w/ my current meds. However, if Amitrip has helped somewhat, i'm thinking it will help if you increase it.

has it helped at all? if so, how? just curious. hope you could enjoy your birthday a little. king happy birthday!

jules

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Re: Happy Birthday to me!

Post  Sarah001 on Sat Sep 25, 2010 6:13 pm

I'm now up to 50mg a day of Ami, the first 10mg made me totally woozy for 3-4 weeks but you have to give it a month to see if it will suit you. Going from 10 to 20mg made me woozy again, then 20 to 30mg made me slightly woozy but from 30mg upwards I've been fine. As long as you increase the dose gradually and give it time for side effects to settle in the early days it gets easier to increase it. Unfortunately it isn't working for me as well as I hoped, it removes burning for me but doesn't touch the soreness I get from my inflamed skin so I'll need something else on top of it next appointment I have.
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Re: Happy Birthday to me!

Post  Sarah001 on Sat Sep 25, 2010 6:20 pm

Forgot, happy birthday! I didn't celebrate mine at all this year I just felt too shit to care much!
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Re: Happy Birthday to me!

Post  Mouse on Sat Sep 25, 2010 10:03 pm

Well I flicked the amitriptylene! Horrid stuff. Out of desperation I went to my GP on Thursday. She said I have the look of someone in chronic pain - good spotting! I now have Gabapentin, I stopped listening when she read out the side effects, they were pretty grim but the first few days have been fine. She also said the twitches I've been experiencing are the bodies response to pain ie being on full alert. Nice to know I thought I was in for something else.

I had a lovely birthday dinner with my friends last night. I still didn't care enough to need parcels from hubby but he's been a wonder through all of this and the illness I had last year, the surgery and every other flaming thing that's come along since. So I consider myself pretty lucky.

Thank you for your responses. It's incredible that ami in such a low dose can be so vile, I wonder how people cope with it as an antidepressent.

Jules, I have generalised unprovoked so I have constant pain which is now settling into a pattern of extreme ugliness at the start of my cycle and in the middle. My resting pain level seems to be decreasing. I was really hopeful this was a good sign but when my period arrived last week I had some of the worst days to date. So who knows??? Sarah, I'm sorry you didn't celebrate your birthday I know what you mean about not caring, after kicking the ami I seem to have come out of a fug and hopefully will find my happy place??????

I managed to find quite by accident a really lovely specialist who doesn't think I'm mad - huge bonus there and I have a great GP who has also seen vulvodynia before. My therapist is keen to get active in helping women find solutions faster. I guess I was pretty lucky with only being treated like a fool and ignored for about 4 months I know it's not that way for everyone. My specialist did her thesis on vulval pain, she's in another city but was well worth the added stress and expense of having to travel to see her. She is so confident these drugs will work I would hate to disappoint her! It was bloody government regulations that said I had to try the ami first - assholes!

Anyway by biggest problem today is dealing with my hangover! affraid Proving you should never mix your drinks! All of that water I mixed with 5 glasses of wine, 2 cosmos, 2 black russians and finished off with a couple of kahluas! You never know what's in the water!

Mouse

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Re: Happy Birthday to me!

Post  Sarah001 on Sun Sep 26, 2010 11:59 am

I think Gabapentin is what I'm going to be given next, as far as I know it's a very effective medication but alot of people I talk to on another health forum have too bad side effects to carry on with it so it's another that some people can tolerate and others can't. I'm surprised I've got on ok with the Ami, normally I get every side effect going but apart from a dry mouth I'm fine, just a shame it doesn't touch the soreness.
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Re: Happy Birthday to me!

Post  Mouse on Sun Sep 26, 2010 7:08 pm

Sarah, the gabapentin is going well so far! I have the dry mouth though, why is that? Early days to gauge any results. I seem to now be experiencing a cyclic pattern so the next ugly bit will be mid cycle. I should be well into the Gabapentin by then.

I know what you mean about reacting to everything, the ami knocked me on my ass. I was so doo lally I couldn't talk for days. I thought it best otherwise I'd still be apologising now.

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Re: Happy Birthday to me!

Post  jules on Sun Sep 26, 2010 8:29 pm

I have been on Gabepentin since January 2010. I started off at about 600 and over time increased the dose to 3000 mg. i had NO side effects at all. for me, the medication did not take away the pain until i was at least 1200 mgs. it helped a little, but over time i continually increased it. the most one can take is 3600 mgs. i finally made it to 3000 mgs and after awhile was still in pain (but, much less pain than without). then my doc added lyrica (i've mentioned this on this site before). over time, i decreased the Gabepentin. but, now i am still burning so, i am going back up a little to 2700 mgs. i was never offered Amitrip. for this disorder. In the US we start w/ the meds we and the doc agree on...(thank God for good health insurance..but, we pay for it). the Gabepentin helped me...i'm sure it will help cut the pain for you.





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Re: Happy Birthday to me!

Post  Mouse on Sun Sep 26, 2010 11:54 pm

I tried to get the good drug first and offered to pay, against regs apparently FFS! We have good health insurance but sometimes I'm still stunned about how much things cost. I didn't get pre-approval when I went to my new improved specialist and nearly fell over when I was given the bill. My flights were also covered by insurance so I was pretty happy about that!

I'm having zero side effects thus far! I think I'm on 900 at the moment. Will keep you posted!

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Re: Happy Birthday to me!

Post  jules on Tue Sep 28, 2010 1:20 am

glad you are not having side effects!!!

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Re: Happy Birthday to me!

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