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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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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

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering


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: 0

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

Vulvodynia-My story and advice for coping with this chronic pain condition

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Vulvodynia-My story and advice for coping with this chronic pain condition

Post  KirstenRub on Tue Jul 15, 2014 1:49 am

If you are reading this posting, chances are you feel downright miserable and are looking for stories that are similar to your own. Stories that offer advice and hope that the pain and burning can and will get better. I sure can relate because I have spent the better part of a year googling vaginal burning and pain every way imaginable, hoping that some magical website would appear and provide the validation that other women must experience this. While I am not sure that my specific story is important, I do have what I think is some good advice that I will share as it seems that I tried a lot of different things. Some of those things helped and some probably made my situation worse and some surely made the situation worse. My hope is that someone will read my thread and find something that they can take away. Either something that they could incorporate into their treatment or something that could be avoided.

My backstory: I am a 39 year old female that has had a history of fibroids and ovarian cysts. I have had 3 surgeries, a myomectomy and 2 laparoscopic surgeries in 9 years. I have suffered from heavy periods intermittently (3-6 months long)and pelvic pain. I have also experienced urinary frequency and bladder pain over a few years that a urologist treated with a bladder relaxer medication. I do not recall having a "painful vulva" or any particular sensitivity. If I was not having heavy bleeding, my sex life was normal and no pain. Last summer I took several courses of antibiotics for an inner ear infection/sinus infection. I was on 3 different antibiotics a total of 4 times between June and September 2013. During my last course of antibiotic (levaquin), I got a yeast infection (culture confirmed). What I remember most about it was that my bladder was extremely irritated and that I had a burning pain. My obgyn treated me with diflucan and sent me on my way. I began to feel better after a few days and maybe went a little overboard with using antibacterial soap. And then there was a vacation in which I got into a heavily chlorinated hot tub... every night. It is no surprise that I had a reoccurrence of yeast (culture confirmed). My obgyn treated me with diflucan and also nystatin because my vulvar tissue had tears from the yeast. I followed the treatment regime and again experienced some relief. Then came a surgery in December. About 1 week post surgery, I began to experience constant vulvar pain. Burning pain and unrelenting discomfort both in and outside. I am no stranger to cramps and pelvic pain, but there was truly nothing I could compare it to. Several trips to my obgyn and primary doctor ensued, every test under the sun performed. All cultures negative for any infection. They both agreed that my tissue was red and inflamed but I was offered no explanation or additional treatment other than steroid cream and more diflucan, I also tried a laundry list of alternative remedies with little or no success. After several months of misery I decided that to locate a physician who specializes in vulvar pain. I was so fortunate to discover that there was a vulvar pain expert in the Central Florida area. I made an appointment and have been in her care since May of 2014. I arrived at her office prepared with every little treatment I have tried and all the results from tests showing I have no infections, exotic yeast... etc. She examined my skin with a special machines that allowed her to see several layers under my skin. She also performed a pressure/pain test. I was diagnosed with Vulvar Vestibulitis and Vulvodynia. She explained that my vulvar skin was absolutely ravaged and we talked treatments. She also performed additional tests to determine if there were any underlying issues. In my case there was not. Thyroid and ovarian function is normal. No infections. My vaginal ph has been at an 8 throughout, but I repeat no infections. It was as if "it" had just stopped working. The only relief I felt was when I was actually on a period. Lucky for me my periods were running about 2 weeks long. The day the period would end, the pain would return and I would be climbing the walls. I began treatments about weeks ago and I have experienced some improvement and hoping to continue to do so. From what I can gather I may have developed an allergy to pads that had caused mild discomfort (bladder) . Perhaps I got this allergy because I wore pads for almost a year straight. Long periods, wearing when I did not have a period because I was afraid of accidents. Then came a yeast infection that caused a full blown injury to that area. So while I had an event, I may have been heading that way for quite a while. I am not sure where I will end up but I do feel better most days and that is a victory. I wanted to share my experiences with treatments and how they worked for me.

Nystatin and plain steroid cream: I used them on and off for several months. While I did get some relief from pain, I suspect that extended use may have helped damage my skin.
Diflucan: I have and will be on this medication for quite a while. I do not have a yeast infection but cannot afford to get one so it is part of my treatment regime.
Rephresh and Luvena: I used these to see if I could get any relief as I was very dry and irritated skin. I think that I may have seen a slight improvement, but not enough to continue to use.
Apple Cider Vinegar: I soaked in sitz baths and surprisingly I noticed a bit of relief for a short time. I assume this was due to my extremely alkaline ph.
Coconut Oil: Surprisingly enough, I have found that coconut oil offers significant relief. I got the idea when my Dr. prescribed my compounded cream. She ordered it made with coconut oil because it soothes the tissue. I ran up to my health food store and bought some fractionated oil. I use it to moisturize the tissue after showering and find that I feel much better.
Vitamin E oil: Tried this as well and worked for me but not as well as coconut oil did.
Sanitary Pads and Napkins: Stopped using disposable ones completely. I transitioned to reusable cloth pads. I have tried three brands now and I give them a thumbs up as far as helping with irritation. You can adjust very quickly but I have gotten creative with layering because I have had accidents. Cleaning them is not as bad as one would think either. They can be pricey to get started, but I have to say that it helped me.
Soap: I stopped using soap. This was really difficult for me. I switched my shower head to one with a filter to help reduce chlorine in my water. I rinse with water twice a day.
Benadryl: I did take this at night early on because it did seem to help a bit at night. Maybe just to sleep a bit better. Maybe because it is an antihistamine and I am allergic to something, yeast?
Prelief: Why not? I read it might help with bladder issues and the like. Did not work for me. But I did get a strange calcified film on my teeth that my dentist told me about it.
Hypnosis: I went to a hypnotist to help manage the pain. I found that it helped relax me a bit and made me more aware of when I was tightening. I found the experience worthwhile to me, but understand that it is not for everyone.
No Panty hose or tight clothes: UGH... NO SPANX and I do hate this. But I know think that it helps me not to where these. I also try not to wear underwear at night, but that is not always possible with me since my periods are longer and unpredictable.
Physical Therapy: I started physical therapy a few months ago and have noticed some improvement. I had high pelvic tone and hold my muscles very tight. They do not release easily. Eventually I will have additional therapy to be able to insert something, but it still hurts too much. My improvement so far has been with the vulvar tissue. The entrance and the vagina are still painful. If I touch it or try and insert something I will have burning pain for a few hours Sad. The biofeedback exercises have been the best for me.
Compounded cream: prescription cream of low dose natural estradiol and clobetasol preparation in coconut oil base applied nightly. To replenish vaginal tissue. This has worked pretty well for me so far. Have had significant improvement with outer vulvar tissue but have not been able to insert an applicator without pain, so have not started that yet. Things downstairs are definitely working better now, thanks to this cream. I am not sure if it will take care of the problem completely but I have good days now. There are still some nights when I apply it, I experience that white hot burning pain.
Flexeril: My doctor prescribed this for me after my first follow up. When I reported some success with physical therapy she suggested this as a complement. I take 5 mg or 10 mg nightly and I do think that it has benefitted me. If only for sleep.
Good Doctor: After going to my usual obgyn several times with nothing but a shoulder shrug I quickly recognized that this type of pain was not his specialty. I cannot stress how important it is if you have insurance or funds to research a physician that specializes in vulvar pain. I was so fortunate to have a top doctor in the US in the Orlando area. She explained my condition to me and gave me a whole packet of information that even included a packet for my husband so he could understand this awful condition. She also told me that there are many more treatments available so if the one I am on does not work, then we can try another. I used the internet to search as well as called around until I found her.

Thanks for taking the time to read my story. If there is anything more that I could do that may assist someone suffering, just let me know and I will do my very best.
I have to say that I never expected to have a condition that was so disruptive and traumatic on a physical and emotional level. I admire all of us that suffer in silence and forced to continue on with their life as if there was no pain. Maybe together we can work to bring attention to this medical condition so that quicker diagnosis can occur.


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Re: Vulvodynia-My story and advice for coping with this chronic pain condition

Post  Alana3 on Fri Jul 25, 2014 6:30 pm

I live in florid you go to lamvu?


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