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» Vestibulectory removes 85% of pain, Birth removes 15%
Yesterday at 8:27 pm by pangea

» Recovered! It gets better!
Fri May 26, 2017 9:40 pm by mary jane

» Pain management - what works for me
Fri May 26, 2017 6:21 pm by SinclairSassy

» Vestibulitiis surgery
Mon May 22, 2017 4:18 pm by Gill

» Does it go away?
Mon May 22, 2017 2:12 pm by mary jane

» Amitriptyline and Uribel
Mon May 22, 2017 1:35 pm by SinclairSassy

» Post Full Vestibulectomy - 5 Years Later - Please Read
Mon May 22, 2017 10:12 am by flick001

» Social Security Disability Benefits
Fri May 19, 2017 8:50 pm by SinclairSassy

» Recovered from Vulvodynia
Thu May 18, 2017 4:20 pm by sarahjane1332343

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 …

Comments: 3

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 …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

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 …

Comments: 4

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 …

Comments: 9

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6

New to the group

Fri Mar 17, 2017 9:52 pm by canuck girl

Hi Everyone
I found the site tonight, and am so pleased I did, I hadn't realised it was such  a problem, and I for one am grateful that the group exists. I recently had a really awful , well the worst one I had ever had UTI, after 4 days of antibiotics it should have cleared though. i now had this awful feeling, and sensations, very sore, burning, some strange sensations I have  that  are hard …

Comments: 1

How do you live with this?

Wed Feb 22, 2017 12:15 am by Persevere1990

Hi everyone,

It's great to see there is a support network here... I was diagnosed a few weeks ago and have started nightly treatment with lidocaine cream one week ago. Not noticing any difference yet.

I notice I get flare ups throughout the day, typically after peeing, showering, walking and when I'm stressed. I'm pretty sure my vulvodynia was caused by nerve damage due to a bad case of thrush …

Comments: 4


Looking for support and advice

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Looking for support and advice

Post  bridgetae on Tue Jan 03, 2017 10:12 am

Hi. I've been diagnosed for a couple years but have had the symptoms for as long as I can remember. Took me years to find a doctor that didn't simply brush my symptoms aside. But even now, I don't have consistent access to a doctor because of moving in between states and especially to a state where there is NOT good healthcare available. I was diagnosed with vestibulitis. After reading through some people's posts, I get the idea that this is a vague diagnosis with very little information. Basically, I have had severe pain at the opening of my vagina associated with biking, inserting tampons, sexual intercourse and a variety of other activities. But the skin all around my labia and perineum easily become inflamed and irritated in general but not nearly as painful as the opening of my vagina.

So I've been through a handful of different treatments including steroid creams, physical therapy, steroid shots in my spine, product and clothing changes etc. The steroid creams had some positive effect. To be honest, I was so discouraged by the lack of progress, I probably quit physical therapy earlier than I should have. Switching to more estrogen-based birth controls helped too. The ones I previously was on tended to dry out my natural lubricants. The only other thing that has been really helpful is a lidocaine-petroleum compound applied on a regular basis. But now I'm stagnant. The pain isn't getting better anymore and I'm depressed. I think i have multiple other conditions but I can't find a doctor who will take me seriously or even address my concerns. It is especially hard because I still do not have a stable living situation so I can hardly see the same doctor twice. What kinds of things can I be doing on my own to diagnose myself and to make things better?

bridgetae

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Re: Looking for support and advice

Post  PainBlogger on Thu Jan 05, 2017 1:16 pm

Have you tried any dietary changes (I'm thinking mainly in terms of making your urine less acidic or potentially irritating to the skin)? Some people find a calcium citrate supplement helps reduce vulval pain.

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Re: Looking for support and advice

Post  bridgetae on Thu Jan 05, 2017 6:17 pm

I have not tried that, but I definitely will now. Thank you.

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Need help as well

Post  jharris on Sun Jan 15, 2017 2:54 pm

Hi there:

I am newly diagnosed as well. I need help and advise. What I tried was Estrace cream and, it helped sometimes and other times not. I was given a steroid cream and that was an irritant and also on Lidocane or something like that while was irritating as well. Please update me anyone on what you did to alleviate symptoms. I am in constant pain and am not sleeping.

jharris

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Re: Looking for support and advice

Post  fairlight10 on Sun Jan 15, 2017 6:18 pm

Hi. I have had vulvar vestibulitis since May 2012. I was prescribed Nortriptyline 20mgs and it has helped a great deal. It is not a cure but it can eventually calm the pain you are having. It is a tricyclic antidepressant that has been used by many sufferers on this site. If this one dose not help there are many others for you to try. Read the posts on this site. Start at the beginning, they are a wealth of information. Also consider what you eat, drink and any other medications could cause irritation when urinating. I would also recommend Yes water based lubricant. Look at your laundry detergent/fabric softener. These can also cause problems in this area. Good luck.

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what about surgery?

Post  infinitelywondering on Sat Jan 21, 2017 11:37 pm

have you considered a vestibulectomy?

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Avoid propylene glycol

Post  Debbie627 on Wed Feb 08, 2017 4:39 am

For women with vulvodynia or vestibulitis, doctors often prescribe meds or creams containing propylene glycol. This can cause severe burning, then you apply more to stop the burn, and the pain spirals out of control. Have you ever noticed how you feel best in the morning and then spiral downhill throughout the day? That's because you are burning yourself with the steroid creams and other meds. Give it a test....you will know within 24 hours. Stop all creams and ointments for one day and see if you feel better. Would love to hear your feedback. BTW... your KY jelly contains this ingredient as well, which in my case started my journey into this condition. Feel better sisters!

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Re: Looking for support and advice

Post  michelle_b on Sat Feb 25, 2017 9:14 pm

Hi, I've been struggling with vestibulitis for about 5 years now. I've tried numerous creams, numbing ointments and I've seen so many doctors I loose count. I have finally found a couple of specialists and both are recommending a vestibulectomy. My advice after everything I've been thru is to pay attention to what is in the creams you are trying. I trusted my doctors completely in the beginning and many of the ointments burned and hurt worse than the natural pain. Others didn't help at all. I found that switching to Dove hyper allergenic bar bath soap, hyper allergenic laundry detergent, and avoiding Always pads helped significantly for the day to day pain. I use Kotex pads during the day and natural cotton pads at night when I'm home. I also found that pure vitamin E oil was very calming for the skin and I use it when I have bad days. I don't know if there is any negative to using the vitamin E oil so I use it only when I need it but I figure it has to be better for me than the chemicals the docs are prescribing. I also have some symptoms of pudendal neuralgia. One of the doctors I saw prescribed a Valium suppository that worked incredibly well for pain from pelvic floor muscle tension. This didn't help with the vestibule burning pain though. For the aching pelvic floor pain I have I found that using foam rollers on my inner thighs helps a lot.

I found the doctors all have the same go to trial and error mentality for treatment. It's all very vague and they just throw conservative darts at the wall until they find something that works or they tell you there is nothing else they can do for you. My advice now looking back is not to wait to long, challenge your doctors and if what they are saying doesn't seem right move on. I tried too many conservative treatments for too long and while not detrimental to my condition it took a toll on me physocologly and emotionally. The pain is exhausting and many doctors don't seem to get it. Also, for a while I also switched to cotton underwear and on really bad days opted for commando. I didn't wear jeans or anything tight for a number of years either. I hope this is helpful.

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Re: Looking for support and advice

Post  Debbie627 on Sat Feb 25, 2017 10:52 pm

My story is very similar to yours and the creams and ointments and KY Jelly during sex were the culprits not the cures. I had the vestibulectomy ...it didn't help me. Of course afterwards they told me to use estrogen cream to help with healing but that contained harmful ingredients. Once I stopped using that I healed quickly. The answer... keep it pure... no creams, oils... or gels of any kind.

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Re: Looking for support and advice

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