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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

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Any advice on with amitrytline?

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Any advice on with amitrytline?

Post  Sparkle on Mon Oct 06, 2014 9:00 am

Hello,

Anyone tried this in pill form? What's it's like? What side effects have you had? This is next on the list for doc to percribe me for my vestibular vulvadynia but I'm worried about the side effects.

Also did it work with anyone with provoked pain?

Any advice is much appreciated. X


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Re: Any advice on with amitrytline?

Post  Caropes on Mon Oct 06, 2014 11:26 am

I am currently on Ami at 50 mg/day. I started Ami after Trying Gabapentin. The GABA alone was not enough. Once I started Ami! It brought my pain levels down to a tolerable level. My side effects have been a 20 pound gain in weight and some brain fog, but it did help! Everyone is different but I have seen many benefit from Ami. Worth a try??

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Re: Any advice on with amitrytline?

Post  Sparkle on Mon Oct 06, 2014 11:38 am

Ok that's good that it's brought your pain down. just a shame about all these side effects! What vulvadynia do you have? And how long have you suffered with it?
Im worried about it cos of seeing it causes drowsiness and I previously had taken anti depressents(not for vulvadynia) and I had to come off them cos I cuouldnt function at work proparly and felt paranoid and very tired. I also don't wanna gain weight cos this condition is bringing my confidences to an all time low :-( I also heard these can ruin your sexual relationship even more then this condition does already. An area I'm really struggling with at the minute... I heard that you can find it impossible to orgasm and you have no labido. Sorry for TMI! Which was side effect of the anti depreasents I used before too. Im really struggling at the minute with all this and the things we can do (me and my BF) is helping to keep me strong. I don't wanna take anything that will take what little I have left away from me...

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Re: Any advice on with amitrytline?

Post  Caropes on Mon Oct 06, 2014 2:30 pm

I have unprovoked Vulvodynia/vulvar vestibulitis. I have constant burning pain 24/7. I have been on antidepressants before. Ami doesn't have the same side effects for me. My libido is good ... not that I want to have sex with all the pain!! I was sleepy for the first few weeks I was on Ami, but that sort of went away. My dose is 50mg. I think it acts as a anti-depressant if it is taken at higher doses. The weight gain does suck but from the place I was at before taking the meds (practically suicidal) to now is so much better. I would give it a try, you can always stop if the side effects out-weigh the benefits. Good Luck!

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Re: Any advice on with amitrytline?

Post  Sparkle on Mon Oct 06, 2014 3:23 pm

It must be so hard for you to have to deal with this pain all the time...I feel for you :-( How old are you?

Yeah your right I guess if I don't like it then I can stop taking it. I'm jist a bit worried about it affecting my work. I have to be on the ball at work. So maybe I should try them at the weekend first off all. I've got a few weeks yet to deside as atm I'm just using lidocaine and I've got the creme form amitriptyline 2% both Mixed together waiting for it tho from pharmacy. Do you take anything else?

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Re: Any advice on with amitrytline?

Post  Caropes on Mon Oct 06, 2014 4:12 pm

I am 46 and was diagnosed with vv about 6 months ago. It happened after being treated for a yeast infection and bacterial infection back to back. Luckily, I do not work. What dose of Ami were you prescribed? My Dr. started me out at 50mg but I have read a lot of women start at just 25mg and still have good results. What type of job do you have? Where are you from? I live in Alabama in the US.

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Re: Any advice on with amitrytline?

Post  Guest on Mon Oct 06, 2014 4:46 pm

I've been taking Amitriptyline for about 15 years, I take 60 mg a day I also take Gabapentin, Vesicare, & Impramime

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Re: Any advice on with amitrytline?

Post  Sparkle on Mon Oct 06, 2014 5:11 pm

How long did you have it before you was diagnosed?

I think that's how mine happend too, I started getting pain after having a bad few yeast infections and I have BV twice.

She hasn't told me the dose yet. I'm trying this creme for a month and taking calcium citrate vitamins aswell and I brought some Vit E oil & coconut oil to rub on myself and fish oil tabs to try and help pain naturally but then she will put me on ami when I go back if I want to. She offered it last time but i said no bcos I wanted to look more into side effects. Cos u get provoked pain maybe I will have the lower dose?

I have an office job but it's quite stressful and I need to be alert or I'll make mistakes. I like in UK, England.

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Re: Any advice on with amitrytline?

Post  Sparkle on Mon Oct 06, 2014 5:13 pm

Hello des,

How did you get on with amitriptyline? Do all those meds help with your pain?

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Re: Any advice on with amitrytline?

Post  Sparkle on Mon Oct 06, 2014 5:15 pm

Sorry in my above post I meant to write I have provoked pain, not u! Silly spell check lol

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Re:

Post  MLily92 on Thu Oct 16, 2014 2:21 am

I've just started on 20mg. It's been two days and I swear the tingling/itchying (which is the only symptom I get, which is driving me f***ing nuts) has gotten worse.

I think it takes a couple of weeks to really start working.

Only side effects I've gotten so far is a return in appetite which is nice and dry mouth which is shit.

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Re: Any advice on with amitrytline?

Post  Sparkle on Thu Oct 16, 2014 10:49 am

Oh dear yeah maybe you need to try a few weeks before anything happens to do with your symptons. Is 20mg a low dose?
I just don't want the tiredness at work and weight gain. I'm quite small tbh but last few years I've got a bit bigger so I worry I might put on a bit.
Don't like the idea of dry mouth. Do all the side effects lessen in time?

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Re: Any advice on with amitrytline?

Post  bluejean on Mon Oct 20, 2014 4:59 am

I was on different antidepressants just for depression before I ever delveloped VV. They killed my sex drive an made me gain 20 pounds or more. My dr asked me if I would like to try to ami and I told him please no due to my past experience, He put me on a cream form of GABO pentin but it didn't help much at all.

I'm wondering now after reading these posts if my VV was caused from anti biotics through the years.

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Re: Any advice on with amitrytline?

Post  Sparkle on Mon Oct 20, 2014 8:32 am

Hey blue jean,

Yeah my symptoms have gone down dramatically using home remedies so I think if it carrya in this way I will not be starting ami. I don't wanna be in medicine for rest of my life, and like u I've had bad experiences with any deprwssents but using oils and being on vitamins isnt so scarey... I wanna do this the natural way as I have had so much relief already from this way. Just read your post about essential oils and I'm going to purchase some frankincense. I already use vitamin e which helps but your post has convinced me to try others too :-)

It could be cos of antibiotics, all story's seem to be similar starting with thrush or infections ect.
I think mine started when I had thrush for ages and couldn't shift it. Maybe it's anti fungal cremes too.

Thanks everyone for your advice I think I'm going to leave ami for now and carry on treating myself naturally
X

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Re: Any advice on with amitrytline?

Post  yoginimom on Mon Nov 10, 2014 7:07 pm

Sparkle wrote:Hey blue jean,

Yeah my symptoms have gone down dramatically using home remedies so I think if it carrya in this way I will not be starting ami. I don't wanna be in medicine for rest of my life, and like u I've had bad experiences with any deprwssents but using oils and being on vitamins isnt so scarey... I wanna do this the natural way as I have had so much relief already from this way. Just read your post about essential oils and I'm going to purchase some frankincense. I already use vitamin e which helps but your post has convinced me to try others too :-)

It could be cos of antibiotics, all story's seem to be similar starting with thrush or infections ect.
I think mine started when I had thrush for ages and couldn't shift it. Maybe it's anti fungal cremes too.

Thanks everyone for your advice I think I'm going to leave ami for now and carry on treating myself naturally
X

Hi Sparkle, what all have you been trying naturally? I am also putting off on the Ami for the same reasons. The gyno has given me nortriptyline because the side effects are milder, but i'm still putting off getting that perscription filled.

I'd love to hear about what all you have tried that has worked (and what didn't work, or made you worse) for your symptoms.

So far i have tried:
coconut oil (sometimes helps, sometimes not)
vit e oil (flares me up worse)
vaginal probiotics (soothing, but only temporarily)
juicing (seems to help quite a bit)
acupunture (helps a lot)
pelvic floor physio (flares me big time, but i'm better the next day)
Osteopathic adjustments (help a lot)
Fish oils, vitamins, B & D suppliment (not sure if they help or flare me tbh)

I'm also doing a long term diflucan to suppress yeast because of how badly i react to even the slightest hint of a yeast infection. Hopefully i wont have to do that for much longer.

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Re: Any advice on with amitrytline?

Post  Sparkle on Mon Nov 10, 2014 7:59 pm

Hey yoginimom,

My symptoms have more or less gone now. I still get slight pain some days but I would say that I'm mainly pain free and haven't used any meds at all.
I have provoked vv. which one do u have? ALthough some days I feel it all day like an ache.. This is mainly if I wear anythink that is too tight around that area or sometimes times after sex with my bf I might have an ache all the next day. Also around my period is worse.
Before I used to bleed after sex and it felt so bad it burned all the way through at times (and going to te loo after was torture)somtimes it was impossible cos the shooting pains I got around the entrance was agony.
Now I get a slight burn occasionally but nothing compared to how it was before.

Vitamins I take are fish oil, calcium citrate and magnesium.
I have come off the combined pill and now only take mini pill which doesn't have the hormones in it. Just progestin.
I use vitamin e oil down Ther which has been a god send for me, it's an organic one from Dr organic so maybe u should try a different one? Which one have u tried? For me this worked better then coconut oil. But I know everyone is different.
I use lidocaine every night rubbed into the vestibules area after my bath and in my bath I am only using aqueous creme to bath with, nothing perfumed. I stopped washing my hair in the bath aswell and now only do that over the sink. As the shampoo can end up getting in that area otherwise... I only wear cotton knickers and wash them seperate to my clothes in non bio powder with NO softener.
I also put baking soda into my baths a few times a week.
I only wear leggings to work as I sit at a desk all day so making sure I am comfatable down Ther is very
Important.

At home I normally just wear no knickers and a pair of my bf shorts or just a baggy tshirt. No knickers to bed got to let yourself breathe.

I started feeling better within a few weeks of doing all these things religiously and every day it just got Al owly better, I feel like the bath thing helped the most. Keeping all perfumed products away from your privates is proba the best advice I was ever given. Fish oils is supposed to be really good coa it has anti inflammatory property's (so keep on with that) and calcium citrate breaks down any oxalate u have in your body. And the vitami e oils really southe me but if that doesn't work for u coconut is the next best thing! Makes sure u use it every morning and night. Like I am with vitamin e.
I'm not sure if one or all these things have worked for me but I'll carry on doing them all as none of them are massive life changes just little things that could help so much.
It's so hard having this and I feel very lucky I am healing so any advice I can give to u isnt a problem at all.

So have u been tested for yeast then? And it came bk positive?? I HATE yeast infections. They are horrible ESP having this too makes the whole situation much worse. Bless you.. X

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Re: Any advice on with amitrytline?

Post  Sparkle on Mon Nov 10, 2014 8:00 pm

Wow sorry for the essay lol I just wanted to make sure you have all the information

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Re: Any advice on with amitrytline?

Post  yoginimom on Mon Nov 10, 2014 9:11 pm

Sparkle wrote:Wow sorry for the essay lol I just wanted to make sure you have all the information

Thank you!! No worries i read it all and it was great! I tested negative for yeast, but they still think i have it. When i go off the diflucan my symptoms flare like mad, so next time i go off it i'm going to swab myself and send it to the lab just to be sure that's what it is. They think it may be a non albicans type of yeast.

I feel like it's getting better for me too. I'm going to try and find the kind of E oil you use. I was just using regular E i used a pin to pop it out of the capsule. Is yours a cream?

I would so much rather do everything natural than go on pills with crazy side effects. I also went to an energy healer, and i tell you that has helped more than anything!

Thanks for all the tips, i am going to try some of them for sure!

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Re: Any advice on with amitrytline?

Post  Sparkle on Wed Nov 12, 2014 8:43 am

No my vitamin e oil is an oil I dont use any cream down Ther except lidocaine but even that is an ointment. Have u tried it?
What's an energy healer?

Yeah I totally agree try and stay off the pills and leave them as a last resort. I do swear by not using perfumed products down Ther and vitamins so defo try those methods and see how u get on :-)

It's funny that u tested negative for yeast but u are so aure u have it? I kept getting treated for yeast too and all my test results came bk as negative. Maybe Ther is somthing elae in the diflucan that is helping u? Rather then it's treating yeast maybe Ther is somthink in Ther that is helping your vulvadynia? Just a thought though..

Keep in touch and let me know if any of my methods have worked for u :-)

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Re: Any advice on with amitrytline?

Post  yoginimom on Thu Nov 13, 2014 4:08 am

Sparkle wrote:No my vitamin e oil is an oil I dont use any cream down Ther except lidocaine but even that is an ointment. Have u tried it?
What's an energy healer?

Yeah I totally agree try and stay off the pills and leave them as a last resort. I do swear by not using perfumed products down Ther and vitamins so defo try those methods and see how u get on :-)

It's funny that u tested negative for yeast but u are so aure u have it? I kept getting treated for yeast too and all my test results came bk as negative. Maybe Ther is somthing elae in the diflucan that is helping u? Rather then it's treating yeast maybe Ther is somthink in Ther that is helping your vulvadynia? Just a thought though..

Keep in touch and let me know if any of my methods have worked for u :-)

Thanks for that! I will look and see if i can find some organic E oil. The coconut oil does work for me, but i've been trying to just leave it be for a while and see if it will heal on it's own. But it's good to have some thing that i know will sooth the area without freaking it out, to have on hand for a flare. Ive also switched to all organic soaps and stuff to see if that may help.

The energy healer person told me that i have trapped energy in my pelvic region from a few very traumatic events, and once that energy is released all the other things i am doing will start to help. Like the acupunture and physio and supplements etc. I thought that was an interesting take on things, so i am trying to work with releasing the trapped energy with his help. I'll let you know how it goes! Fingers crossed it will help. If you want you can PM me and i can tell you more stuff about it. Smile


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Re: Any advice on with amitrytline?

Post  yoginimom on Thu Nov 13, 2014 4:11 am

PS yes i use lidocane 5% during flare ups, but i try to not use it unless the pain is more than a 6 out of 10, because it can be irritating for me if i use it too much.

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Re: Any advice on with amitrytline?

Post  Sparkle on Thu Nov 13, 2014 9:34 am

I got no idea how to PM im not sure what version of this I m using? How do I PM?

I think if coconut soothes u that u shud use it all the time. I use vitamin e oil for the same reason and I use it more then twice a day even tho I'm mostly pain free now. I know u don't wanna feel like u have to rely on anything and it wud be great if this thing would just disappear but if somthing works for u to make te pain any less then keep on with it :-) Thers is no cure for this we just have to try and manage it. It's a shame lidocaine irritaes u... That stuff alway stings a bit but afterwards it goes away and numbs the area it must be fustrating for u to not be able to use that for relief..,
Do u have generalised? Or provoked? Would u say u have for better with any methods or is your pain still bad?

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Re: Any advice on with amitrytline?

Post  Sparkle on Thu Nov 13, 2014 9:39 am

Oh I also heard that ingesting coconut oil works wonders for some ppl. I used to make Lollys with it but don't anymore.

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Re: Any advice on with amitrytline?

Post  A2015 on Sat May 23, 2015 6:22 pm

Hi Sparkle,

I realise it has been some time since you posted, but I am hoping you may see this reply.

My symptoms & situation really seem to match yours. My provoked symptoms have started after a Yeast & BV infection a few months ago.
Also, to cut my long story short, I suffered with VV 3 years ago, which started in exactly the same way with those 2 infections, as well as being on the Pill. What completely cured me was coming off the combined Pill. I haven't been on the Pill since, but have had my VV symptoms start immediately again after this recent Yeast & BV infection.

I've felt some hope reading that your vestibule soreness was greatly relieved/cured?! by using natural remedies such as Vitamin E oil. Although when I read that you changed from the combined Pill to the the mini pill, I can't help thinking this is what resolved things for you, beyond the topical treatments applied. Can I ask what time frame you made these changes? When I was cured of VV, all I did was come off the Pill and it disappeared entirely within weeks, no topical treatments needed.

Do you still use Lidocaine? Or the Vitamin E oil? Have you had problems since?

Thank you
A2015

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Re: Any advice on with amitrytline?

Post  Sparkle on Sat May 23, 2015 8:43 pm

Hey A2015

You know I don't use vit e anymore, I use coconut oil every single day down there and it's so nice I feel it helps keep things at bay. I also think not using purfumes products down Ther helped me the most in the bath. I find my symptoms come back a bit when i get thrush.

I did all the stuff I mentioned in previous posts about a year ago and I am cured most the time but I still get flare ups of I wash my hair wile im in the bath or sontimes sex can make me sore again for a bit.
Oh I Find that fish pils work too as they natural inflammatorys.

Hope this helps. Glad to hear you found some reliefs with yours I think that thrush can bring back symptoms Sontimes, I find that happens with me but I guess even of you didn't have VV thrush would still make U sore...so make sure that U concentrate on getting rid of that and hopefully the symptoms will disappea again. I use the pill not cream when I get it.

No I don't use lidocaine unless I flare up but I haven't needed it lately.
Let me know if U have any more questions
X

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Re: Any advice on with amitrytline?

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