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» 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

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» 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 …

Comments: 1

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: 9

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


Help me please!

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Help me please!

Post  fleener on Fri Sep 20, 2013 8:06 pm

Hello:
After I found out I had an estrogen/progesterone fed Breast Cancer tumor last october - I was taken off my hormones. I was put on hormones to help this condition about 15 years ago when I had the same problem. Any way after being taken off H ...about a month later I started to get a pain along my left vaginal wall starting from the opening and going up 2 inches on that wall. I was in so much pain after sex I ended up as an emergency case at my GYN's. He put me on a regimen of estrace cream and gabopentin ointment - anti- anxiety meds and Oxycodeine. This regimen only helped a little bit. I also had some burning after urination. Is this kind of pain really considered Vulvadynia? I find it painful to sit and won't go near having sex.

Then I decided to go see a Female Doctor Dr. Zolnoun at UNC vulver/vaginal pain clinic in NC. She changed up my medication to an anti - seizure medication and muscle relaxers. When I went to see her I was sitting on ice... 2 - months later I flew back home to Alaska not having to sit on ice. (I have a sister there in NC I could stay with to keep costs down). The Doctor also gave me a pessary to insert vaginally each evening - she thought I had a muscular problem pinching on a nerve - (while at my sister's I used it and never bled from it, but when I got back to Alaska after using the pessary I would find blood in my panties. So I stopped using it. I also am having a total relapse of the pain, sometimes burning after urination. (i have tried not eating high oxalate or acidic foods). Two nerve blocks here from a pain doctor has not helped.  My Physical Therapist has told me she doesn't know what else to do with me.  I try massage and acupuncture and they only seem to help for one day. I am starting to feel I'm at the end of my rope. I'm trying to follow up with the Doc in NC - but I'm not sure what else she can or can't do for me. Help please...
Eli

fleener

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Help me please

Post  meelie on Sat Sep 21, 2013 7:56 pm

He hon, you should join the Vulvodynia Society and find a PT that specializes in vulvodynia. Just any PT is not trained in what to do or what it really is. I have found one here in Ga and praise God I think she helping me. I have been to 4 apts and she did internal "massage" last week and it actually eased the burning for a few days. I have great hope at the moment. I finally figured out that it must be due to a pelvic fracture that I experienced on 4/30/2011 and I have been sitting on my right 'cheek' since then to avoid pain and it tightened and knotted up my pelvic floor muscles something awful. I pray you and all the others will find someone to help you and that my PT will be able to get my pelvic floor back to normal soon and that it stays that way. God bless.Smile 

meelie

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Help me please!

Post  fleener on Sat Sep 21, 2013 9:54 pm

Thank you Meelie for your reply. I will see if there are any Vulvadynia PT's n Alaska...which I doubt. OR I may look for one where my sister lives (in Concord, NC).

fleener

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Re: Help me please!

Post  zarli on Mon Sep 23, 2013 11:07 am

keep trying everything you can, you will find something that helps you. Please know you are not alone and when you are feeling bad think of all of us here on this forum, that's what I do. Every one is different and it can take time to find the thing that will help you, keep positive nothing stays the same.

zarli

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Help Me please!

Post  fleener on Mon Sep 23, 2013 6:49 pm

I am trying to do everything.... -a GYN I went to in North Carolina suggested Gabopenton. Taking it by mouth - so we'll see. The bummer is - I see my friends and sisters are working at great jobs and it is snowing in Alaska - so I am very depressed about my situation. I was a TV Producer - but because of my health - not sure I'm capable of doing that career anymore....just feeling very bummed out. Guess I need to find something that will make me happy.

Thank you for your response!

fleener

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Help me please

Post  meelie on Tue Sep 24, 2013 12:43 am

I was taking Neurontin like your gyn gave you but because mine is due to pelvic floor dysfunction the burning usually went away at night when I was sleeping, laying down without any pressure on my pelvic floor. I finally realized that even with the medicine nothing really changed because even with the Neurontin the burning would start again after being up for a little while the next morning.
I only took it at night and then when I started taking it morning and night it started messing with my brain and making me feel weird like spacey or something. So I quit taking it and nothing changed. Burning went away at night and returned the next morning.
So I guess I was taking it for nothing. But, I do hope it helps you. And don't give up. My PT says she had someone come from way over from the coast of Ga that was taking it and it helped her until she had a flare up and that sent her to Laurie.
I surely pray that you can find a PT to help you. Did you join the Vulvodynia Society? I haven't renewed my membership since I have found hope but if I can get on the site I will see if there are an PTs in Alaska.

meelie

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Help me please

Post  meelie on Tue Sep 24, 2013 12:55 am

Oh crap, I just logged on and it says it will send on request medical professionals for your area. I have already got my list for the Georgia area so it looks like you will have to join unless there is someone else on the post that might be from Alaska. When you join you have to tell them where you live. Anybody out there that might be from Alaska or know someone who is a member that lives there?

meelie

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Help me please!

Post  fleener on Tue Sep 24, 2013 3:26 am

I haven't started the Neurontin yet...so we will see. I do have a PT here. She comes highly rated by a friend who use to have Lavater Syndrome. PT use to actually go inside my V and press on the muscle she thought was spasming out. The first time she did that I felt relieved of pain the next morning. But the next two times it felt more like she was aggravating the problem. So we just do trigger point therapy and gentler exercises at home - she is also looking at getting me a biofeedback machine to use at home. Thank you so much for all of the input!

fleener

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Re: Help me please!

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