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» Change in birth control question
Yesterday at 3:47 pm by Jo44

» 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

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

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


New here, my story and looking for advice

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New here, my story and looking for advice

Post  rachiecakes on Wed Apr 26, 2017 9:02 am

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching and burning never subsided and since then I've had almost...a dozen negative swabs that show no sign of infection. I don't have redness, swelling or abnormal discharge...my vagina looks...completely totally normal. Unfortunately as you can imagine - the pain, burning and sometimes itch has never subsided. I have periods of relief, periods of mild irritation and sometimes times of terrible pain that makes it hard to walk. The pain is all over - not just my vestibule. Some days my anal area is so sore, around my clitoris and labia.. even my pubic hair hurts. Other times I feel almost normal and sex is normal etc. Sometimes it feels like I have a sunburn - it feels like the skin is so dry (even though it's NOT and theres no visible issues and I'm covered in coconut oil)

Again I get swabbed when I'm feeling good - all clear. I get swabbed when I'm in terrible pain - all clear.

The gynecologist I saw said "this will go away on it's own" but sometimes the pain is terrible!

I've done tons and tons of vulvodynia research and it does seem like all signs point to vulvodynia...but a lot of research says generalized vulvodynia happens more with older women. I already have IC so is my pain less likely to go away on its own? Has anyone had a similar story - or any helpful tips? I've changed all soaps, use coconut oil, wash with emollient etc. all those first line options. I've been researching meds but sometimes it all feels very hopeless. If I go on meds do I have to stay on them forever?

Thanks Smile

rachiecakes

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Re: New here, my story and looking for advice

Post  fairlight10 on Wed Apr 26, 2017 4:19 pm

I would stop all lotions and potions in that area firstly. I have been on nortriptyline 20mgs for 5 years.I have tried to drop to 10mgs but I get irritation start up again. 20mgs keeps me comfortable and sane. If I have to take it for the rest of my life then, I will. I could not go back to that pain again. Vulvodynia can affect the urethra as well as the other areas you have experienced this condition. It can affect females of all ages. Women who suffer fibromyalgia, migraine, chronic fatigue syndrome, irritable bowel, intersistial cystitis are likely to suffer with vulvodynia. All these conditions can be helped with low dose antidepressants. I hope this has been a help.

fairlight10

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Re: New here, my story and looking for advice

Post  PainBlogger on Wed Apr 26, 2017 8:33 pm

If you go on meds and find they work, you can always try coming off them after a period of time. The meds may break the pain cycle so not be needed forever. I've had good results with duloxetine. You can read my pain background here http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement to save me retyping. Smile

I really understand your frustration. It really is a horrible problem to deal with. But people do get better.

PainBlogger

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Re: New here, my story and looking for advice

Post  Hatty on Fri Apr 28, 2017 2:43 pm

Has anyone tried Gabapetin for pain?

Hatty

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Re: New here, my story and looking for advice

Post  mary jane on Thu May 11, 2017 4:40 pm

sounds like the nerves are irritated. You could go on a low dose of ami or nortriptyline for a period of time and it should subside. It takes at least 4 weeks for it to work..for me it took 3 months almost but the symptoms dissapeared
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Re: New here, my story and looking for advice

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