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» Post Vestibulectomy
Yesterday at 6:48 pm by JGD13

» Vestibulectomy
Fri Aug 18, 2017 12:39 pm by Hopeitworks

» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 4

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: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

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: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 0


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?

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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.

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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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