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» Did going off antidepressants cause this?
Today at 2:08 am by ryn207

» 7 months since the diagnosis
Yesterday at 11:43 pm by agtoronto

» Sex after vulvodynia (husband edition)
Mon Aug 13, 2018 12:15 pm by emalita

» burning sensation and small cut? Maybe thrush?
Sun Aug 12, 2018 8:24 pm by emalita

» can v return after vestibulectomy?
Sun Aug 12, 2018 12:01 pm by Alana3

» Cleveland Clinic - Pain Management, Weston, FL
Sat Aug 11, 2018 12:37 pm by Alana3

» Hurting, Burning, Itching, and Worn Out
Fri Aug 10, 2018 7:55 pm by fairlight10

» GREATFULL FOR THIS WEBSITE
Thu Aug 09, 2018 8:37 pm by Nicola Jost

» Can you guys tell me your experiences with diflucan/Fluconazole?
Tue Aug 07, 2018 6:01 am by Guest

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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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: 3

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: 6

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 …

Comments: 3

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 …

Comments: 10

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


New and need some help

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New and need some help

Post  LindafromNJ on Wed Feb 21, 2018 4:30 pm

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some days are better than others.  I had something like this last April after a labia biopsy and also had Lavatore Ani.  I was going to physical therapy which helped the Levatore Ani.  It all went away for 6 months and now the vaginal issue has returned.  The vaginal creams all say external which is confusing if they are vaginal.  My issues are around the entrance and a little inside.  I have Aquaphor which I have not tried and the Vaginitis Center prescribed a cream that is compounded with antidepressant, nerve pain killer and something else.  Have to get from compound pharmacy.  I have concerns about the cream as I heard it burns more than the condition it is treating. I live in New Jersey where I see no support groups as far as meeting and talking in person.  Would really like to talk to someone.  What have others been using?  Oh and by the way I have been on Estrace Cream for the last 8 months for vaginal atrophy.  I am so depressed but have a wonderful husband that is supportive.  I am retired and want to enjoy my retirement but in discomfort.  Any help is appreciated.  Thanks.  ps.  I am not the most computer literate so don't know what is meant by attach files are for. Please explain.

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Hang in there!

Post  Sad on Thu Feb 22, 2018 12:49 am

I am also new to this site so I can't really offer any help but to say that you are not alone. I sometimes feel like if I were to try to explain the problem to others that people would look at me like I'm from another planet. I too am in my 60's and my husband is very supportive also. I've had this problem for 20 years and have tried so many different things but nothing really helps long term in my experience.
I guess the only thing that helps (mentally) is knowing that there are others like me and I'm not some kind of freak.
If you find something that works I'm sure we would all love to know about it. ????
In the meantime I wish you the best and hope you find something that works for you,
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What has helped you

Post  LindafromNJ on Thu Feb 22, 2018 10:37 pm

Just wondering what you have done and what has given you temporary relief. I wish more people would respond to my post.

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Re: New and need some help

Post  fairlight10 on Fri Feb 23, 2018 1:12 pm

Hi I have had vulvar vestibulitis for almost 6 years. I was given Nortriptyline 20mgs and it started to help within a few weeks so I have stuck with it, because it is not a quick fix it can take months for you to feel comfortable again. Also,acupuncture can bring relief by bringing down your stress levels and help you deal with this horrid condition. Some of you recently have made a connection with being stressed and this condition flaring up. For those ladies who are postmenopausal, there is a vaginal moisturising gel called YES.VM that I use. It is water based contains no irritants. It can be bought on line. I would not want to put lidocaine inside me but I have used YES.VM and it was ok. Hope this has helped you.

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post menopausal

Post  LindafromNJ on Sun Feb 25, 2018 6:13 pm

I m post menopausal and had vaginal atrophy so was put on Estrace Cream which helped for 5 months. Still on the Estrace but again have pain at the entrance of the vagina. This is so depressing

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Not much relief that I have found

Post  Sad on Fri Mar 02, 2018 1:52 am

Boy that's a tough one! I found that cutting out all soy products gave me some relief but not as much as I had hoped.
I was on nortriptyline for awhile but that didn't help much either.

When it is really bad, sitting in a very warm bath (as hot as you can stand) sometimes temporarily helps. I also tried some special cream (can't remember the name of it) but that didn't really work either.

I am not willing to do any kind of surgery even though some people says it helps, I've also heard other people say it was a nightmare.

I was seeing a physical therapist briefly who said that working on your pelvic floor muscles helps.

The only thing that really helped for about six months was numbing shots they inject directly into the areas that have pain, but it hurt like heck and caused a lot of bleeding. I wouldn't do that again, it was quite traumatizing.

I wish I could offer you some better options as I also wish that I could find.
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RE: New and need some help

Post  Antaea on Fri Mar 02, 2018 7:28 pm

I am 68 and got have my diagnosis since nearly 2years, after an episode of one year in 2008 due to very low estrogen levels. In my case, the V is linked mainly to hormones, but this is only one aspect. I got my diagnosis 6 weeks after onset, and have taken Gabapentin since.Together with Ovesterin cream (Estrace in your part of the world), I am pain free more or less. After major stress over a long time I normally get a flare, where I have to increase the Gabapentin and also have to take HRT for one month, half a tablet each day. (Otherwise my migraines are back...) The last flare lasted 7 weeks. Now I'm back to 400 mg Gabapentin every 12th hour and Estrace cream twice a week.
It is very important to educate oneself about the different therapies and treatments. You will find an "awsome" lot of intormation here.
I also recommend to try Gabapentin. Amitryptiline is (at least here in Scandinavia) a Second Choice, it is only prescribed after at least 6 months of Gabapentin, when this drug does not work properly. It has very severe abstinence effects when you stop the medication, and some can become irreversible. Both drugs alter the perception of pain impulses in the brain. They are not pain killers.
Gabapentin is much more gentle and you can take a fairly high amount.... (3600mg a day).
During my flares I also used Tramadol at night sometimes and Parcetamol/Codein tablets. (Don't know the brand names in English). Lidocain/Xylocain also does help, even it burn in the beginning. But that is more a feeling of local heat. Cotton underwear, rinsing with lukewarm water after every visit of the bath room, using only washing oil, maybe some food changes..... I use a lot of coconut oil several times a day. I even eat a teaspoon of it every day.
For making a long story short: Everybody has her own kind of V. For us seniors, essential V often is linked to estrogen levels. What helps me, must not help you. Information is crucial, finding out what helps, too, without trying a lot of different ointments "downstairs". An equal communication with doctors and health personal, maybe demanding a promising therapy/treatment.
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Tramadol worked for awhile

Post  Sad on Sat Mar 03, 2018 1:11 am

I did use tramadol for awhile but after using it for quite a long time it started making me extremely itchy. I would usually take it at night to help with the pain so I could sleep, but when it made me itchy thenI couldn't sleep because of that. So the short of it is I can't use it anymore.
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Re: New and need some help

Post  davesjen on Sat Mar 03, 2018 12:48 pm

Go to Target...as fast as you can get there...Vagicaine...their house brand, less than $3.00 a tube...it’s the only thing that’s kept me alive - works better than ANY prescription med - burns a little at first , but, nothing compared to the pain I’m used to everyday...and then numb...for a few blissful hours, I can feel nothing...blessings to all my sisters out there who suffer...

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vagacaine

Post  LindafromNJ on Sat Mar 03, 2018 10:54 pm

Doesn't that burn if it gets inside? My burning is at the entrance of the vagina.

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Re: New and need some help

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