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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

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 …

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MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4


New Member, scared and depressed

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New Member, scared and depressed

Post  Coldchris on Thu Jun 09, 2011 7:04 pm


Hi Everyone:

So glad to have found this site. This is my story. I had an UTI. After UTI, yeast infection, treated by diflucan, cream and OTC monistat. Did not get better. Many trips to dr. Treated shabbily. Went to Seattle (I live in Alaska) to a specialist who said I had a hyperimmune response to the yeast and had swelling and inflammation. Got some cream to use 2xs a day for 6 weeks to help get it in check. Mid way through, got an absessed tooth and had to go back on antibiotics (still on them). Had antibiotics (pro biotics to balance them), vicodin, advil, tooth numbing injections, etc. Urine was like acid I bet and really irriated the heck out of inflammed vestibule. Sitz baths and keep on the cream. Started using domeboro sitz baths but I think this may be trying out the rest of my skin. (Has anyone tried Aveeno?) I am struggling with this and feels like it just keeps coming. I'm scared, depressed and feel very alone. Go back to specialist next Wednesday. Did anyone else feel so overwhelmed and depressed?
Coldchris




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Re: New Member, scared and depressed

Post  jules on Thu Jun 09, 2011 10:58 pm

ColdChris, your feelings are very normal. I can speak for myself and for the women i have been friends with online who have Vulvodynia. we have all felt depressed and hopeless at times. It is very difficult to live w/ chronic pain. It's discouraging to have to go from one doctor to the next to try to first find out why you have pain and then for treatment options. The good news is that there are a number of treatment options for the pain. We all have different results from meds., creams, gels, and other treatment options. Your disorder started the exact same way that mine did. I thought i had a UTI, took antibiotics, then months of treatment for a yeast infection i never had. I want to warn you about creams. If your pain continues (bad burning, bright red skin) or increases, i would recommend that you stop using the cream and talk w/ your doctor. Creams have alcohol in them. This can burn the skin. Even gels or ointments can irritate the skin. I believe the creams and gels i used made my condition worse. I hope your cream helps you.

I have tried many treatment options. As you will see many of us see physical therapist. I am going to start acupuncture next week. I'm also on three different meds. along w/ percocet for the pain. a therapist is recommended just to talk w/ someone about the pain and how to manage it. if you are feeling depressed, you are not alone. make sure you tell others around you how you feel. don't go it alone, reach out and ask for help and support, glad your doc gave you some pain meds. they also use some anti=depressants and anti-convulsants to deal w/ this pain disorder. I'm on Gabepentin, lyrica and Cymbalta. i still struggle w/ pain, but it would be unbearable w/out these meds. take care...ttysoon.

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Re: New Member, scared and depressed

Post  Coldchris on Thu Jun 09, 2011 11:57 pm

Thank you soooooo much. You don't know how much a little light shines so bright in such darkness~! I just have to keep telling myself I will get through this, I will get through this. You are right on about the creams. I should have said ointment. He gave me a steroid ointment to help with the inflammation. I see him again on Wednesday (another trip to Seattle from Alaska). I am starting my period today and think this may have contributed to this darn flare up. I call it my angry, angry vagina. Did you get flare ups around menstruation?

Coldchris

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Re: New Member, scared and depressed

Post  jules on Fri Jun 10, 2011 11:44 pm

how far is Seattle from your home? i'm glad you're connected to a specialist. it sounds like you're on the right track. to answer your question, yes...i always get a flare up prior to my period. there has to be some connection w/ hormones because this seems to be common in women w/ V. I usually have more pain for about a week before my period and maybe one day into my period or so. i have generalized vulvodynia. pain all over the vagina. others have the vestibulodynia...pain in the opening and inside the vagina. i am able to use tampons w/ no problem. i can also have sex, but generally don't want to because my vulva is frequently "on fire." Are you able to sit w/out pain? i have to sit on a foam donut everywhere i go. my goal is to be able to sit on a chair someday. what a goal, huh? i try without a cushion once in awhile and pay for it. right now my pain is fairly bad. another thing i can't do is work out. after about 5 mins, my vulva burns. the good news is that there was a time that i was able to while on meds. sometimes you find meds that work or a combination of meds that work and then they stop working so you have to add a new med or adjust the dosage. there are good times and not so good. Hey, i'm from Minnesota...another cold state. we have the cold in common. a couple days ago it was 103 degrees here and today it was in the high 50's, now 60. Did you grow up in Alaska? I hear it's beautiful!

jules

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Re: New Member, scared and depressed

Post  Mouse on Sat Jun 11, 2011 3:08 am

Hey coldchris, welcome!

As Jules said we've all had desperate times. It really helps to reach out and also find a therapist who can help you make sense of all this.

Good luck with the specialist. A pain clinc is a great place to find answers also. Be kind to yourself, it's not easy having a chronic pain condition that's also not that socially acceptable. A pain in your leg would be a much better option!

Take care, we are all here to help Smile

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New member scared and depressed

Post  ria on Sat Jun 11, 2011 7:41 pm



Hello Coldchris,

Its great having the information from all the Ladies on this website. I am sure you have read through the posts , great advice and its good to know we are not on our own. Good Luck with the specialist.
Take care
Ria











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Re: New Member, scared and depressed

Post  noni on Sat Jun 11, 2011 8:52 pm

Hey coldchris,

Its absolutely normal to feel depressed and totally alone in this. This condition, and partly because of its nature, is very isolating. Theres nowhere to go when you get a terrible flare up. Go to the ER and they will look at you as though you are a basket case. To many doctors vulvodynia is just a nuisance. First, they havent got a clue how to treat or manage it and secondly they dont understand the intensity of the pain. This isnt just regular pain its nerve pain. Which, by the way, is difficult to treat...same as diabetic neuropathy.

Its so awful that each day is such a battle for us. We fight against the physical pain and we fight against all the negative emotions and thoughts that come along with having chronic pain.

coldchris, feel free to vent on here anytime.

noni
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Re: New Member, scared and depressed

Post  Sarah001 on Sun Jun 12, 2011 12:07 pm

It can be neuropathic pain but isn't always, it can also be completely muscular or referred pain from another area or purely mechanical from postural problems or even an undiagnosed skin condition, that's why the medication aimed at neuropathic pain often doesn't help and why Amy Stein approached Dr Andrew Goldstein years ago to suggest physio rather than nerve meds and has had good results. It's different for all of us and also why the book When Sex Hurts is a good one to read because it helps to establish the source of the pain rather than just writing it off as unexplained. That's not to say the nerves aren't involved, they are involved in all pain as they transmit pain signals to the brain but if this was always neuropathic pain there wouldn't be the silly non-diagnosis of "vulvodynia" which doesn't mean anything except "pain in the vulva" and medication for neuropathy would work for all women with V so there's be no mystery involved.
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Re: New Member, scared and depressed

Post  Coldchris on Mon Jun 13, 2011 5:09 pm

Thanks to all. The flare up has greatly decreased and I almost feel human again. I wonder when the next bout is going to come, but try to be in the present, that it is not happening now. Thanks for all the posts. It was a really, really rough time.

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Re: New Member, scared and depressed

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