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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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» 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 !!!
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» Pain management - what works for me
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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 …

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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). …

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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 …

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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.

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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 …

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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 …

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35 and scared out of my mind :(

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35 and scared out of my mind :(

Post  Kathye10 on Mon Feb 18, 2013 3:24 am

Hi Ladies,

I have read so many stories, some I can relate to and others of encouragement that give me hope. My heart goes out to all of you. I thought I would share my story and see if anyone else could relate or had a similar experience.

I hope this isn't TMI but I'm assuming on here anything goes...

Last Nov (2012) I had sex (protected) with a man for the first time in 8 years. I was in a committed relationship with a woman in between. The sex was fine, no pain and enjoyed myself. The next night when I went to bed, I started to feel that itchy/burning sensation and figured it was a yeast infection. Used a 3 day treatment with no relief. Now before all of this I had never really had any vag problems. Just an occasional YI every couple of years that went away with a 3 day treatment. After the treatment didn't work, I decided I should probably see my gyno. She took a culture and it came back as having Group B strep. She treated me with 7 days of penicillin. By the 5th day I started to feel normal again, but a few days later it came back. Did another yeast treatment with no luck......ugh, back to the gyno! Still had Group B strep. Tried Cleocin ovules and that made matters worse. Gyno told me to stop everything and see if it would go away on it's own. Well, as you ladies know, I was not about to see if "nothing" would work. A friend suggested I see her nurse practitioner. She took a look and at this point had moved to my anal area as well. She took a culture and it came back negative for yeast and bacteria, WOO HOO, I thought!! She suggested that I go see a dermatologist to see if I had some sort of dermatitis. So that's what I did. He did the Q tip test and said, you have VVS from being over treated. You need a Steroid injection and cream and you'll be cured in a week! I thought OMG, 1 week after a month of suffering? AMAZING! An hour or so passed and the injection wasn't kicking in. I thought, okay maybe it takes a couple of hours to notice a difference plus I should probably try the cream. I tried the cream and it BURNED! I thought, maybe it's suppose to, that means it's working, right?

After a couple of days, none of it helped and this was the last time I was able to wear jeans. Just thinking about it makes me want to cry. I recently lost 60 pounds (WW) and just bought a new pair of jeans that looked and felt amazing. I researched VVS and started to panic, I felt so much despair as I'm sure most of you did, but what didn't make sense to me was my symptoms....

Burning, redness and slight itching of the WHOLE vulva area and anus. I now realize that with V you can have all of that. The redness is almost like a ring around that starts above my my clit and goes around to the opening of the vag. in between my labia majora and minora. Does anyone else have this?

About this time is when all hell started breaking loose. Couldn't wear jeans, started to have to spray myself with water after I urinated because it stung so badly, took warm bathes to soothe myself twice a day, could barely wear underwear let alone sit for hours on end at work, you ladies know the feeling Sad I also changed laundry detergent, soap, toilet paper, etc.

I couldn't take it anymore, I had to keep searching for relief. Saw a nurse practitioner who SWORE up and down it was yeast, then pressed on my bladder (it hurt SO badly) and said I had a UTI. Now, I've never had a UTI before, but I'm pretty sure you KNOW when you have one. There was no urgency to "go", no pain, nothing. She prescribed me meds and I wouldn't take them until the test results came back. I wasn't falling for that crap anymore. When the results came in, it was the same thing, no bacteria no yeast. She wanted me to see the DR on staff. Oy, okay....saw the new gyno a couple of days later. She looked and said it looks like yeast, but I know it's not. She decided it might be best to get a sample and do a bacterial DNA probe which would show if I had anything that doesn't show up on a normal culture. Came back saying I had 3 different types of bacteria. Was put on 2 different antibiotics and they didn't relieve my symptoms. Went back this past week she took a culture of just the external parts that are inflamed and did blood testing to see if I have herpes or an auto immune disease (pretty sure I don't have either, but it's better to rule them out) I get the results tomorrow or Tuesday but I'm pretty sure I already know the answer. And on top of that, I had no clue how expensive the DNA testing is ($3,000) and now I may owe the lab $6,000 because I don't think insurance covers the testing. I don't have that kind of money No

This whole ordeal has taken such a toll on me emotionally. There are days when I'm at work and in so much pain, I find a quiet place to cry. I have no social life because by the time I come home I hurt so bad, I just want to soak in the tub and do as much internet research as I can wearing my old "fat" cotton lounge pants. My close friends are very supportive and check on me which is wonderful. As you girls know, this is VERY isolating. I often feel sorry for myself and wonder why this happened to me? I wonder if I will ever lead the normal life I once had, taking things for granted like riding a bike, sitting for long periods of time, having a normal sex life, or even meeting someone who can deal with my problem. Will I be alone forever, just my 2 dogs, isolated in my house? I'm so scared and angry right now. I just wish I could take back having sex with him. I'd do ANYTHING to take it back.

At this point I'm pretty sure I have V and not VVS. Wondering if any of you go through urethra burning as well? I'm trying to figure out where this stems from, whether it's a pelvic floor problem (I have a bad back), hormone related, or just came on because I was either allergic to something on the condom (spermicide or lube) or the bacteria's caused it and I had an auto immune reaction where my nerves won't shut off. Just trying to figure it out so I can get the proper help. One thing I noticed that has helped a bit (or maybe I'm crazy - haha) is taking Vitamin D3, have any of you tried it?

I'm looking to connect with anyone who would like to chat. At this point I'm more into natural remedies than western medicine because I feel that may have lead me where I am now. If anyone has any suggestions, I'm all ears (or eyes in this case)

Thank you for reading my story and I hope you all get permanent relief SOON! Smile
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Re: 35 and scared out of my mind :(

Post  Sarah001 on Mon Feb 18, 2013 11:31 am

Hi and welcome. I'm a bit short of time but regarding the pelvic floor question it is possible for any woman with V to have a pelvic muscular problem and the only way to know for sure is to go and get it checked out by a Women's Health Physio. Your back problem could be part of it and you could have a misaligned pelvis or tightness in the lumbar area can press on nerves that supply the vulva and during an experiment on rats they found these nerves cause redness and inflammation at the end organ - the vulva. So it's definitely worth seeing a physio to rule that option in or out.
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Re: 35 and scared out of my mind :(

Post  Alana3 on Mon Feb 18, 2013 12:10 pm

I don't mean to scare you but ic can also cause uretha.burning and a red.vulva. Your bladder pain made me think about that. I obviously don't know but it may be something you want to check on too. Hang in there tho you will be fine I went thru everything you're talking.about and I finally found a doctor who helped me. Where do you live? I swore off anything not natural but it actually made me worse so please be careful!

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Re: 35 and scared out of my mind :(

Post  Kathye10 on Mon Feb 18, 2013 4:55 pm

Thank you ladies for responding.

Sarah - Thank you for the info. I'm wondering if my Chiropractor (who I don't see often enough) would know. I think I will make an appt for this week. If not, I will see if there is a physio in L.A. that specializes in these matters.

Alana - I will def be careful when it comes to natural as well. Right now I'm not putting ANYTHING down there in fear of making it worse. As for IC, other than the bladder pain (only if provoked by gyno) I don't have any of the other symptoms, like frequency, urgency, nothing like that. But I will also look into it. I'm hoping to see a Gyno that specializes in Urology as well to help me figure this whole thing out. I'm in the Los Angeles area.
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Re: 35 and scared out of my mind :(

Post  Alana3 on Mon Feb 18, 2013 5:03 pm

Yeah, I didn't think I could possibly have it either, but they tested me for it- turns out I didn't but it sometimes starts out small and escalates- you want to catch it while small. Have you checked out the NVA.com it tells you where specialists are. I also found my doctor by typing in vuvlodynia specialists Florida and he came up. It's worth a shot. He's done a world of good for me, but unfortunately, I don't live anywhere near you Sad You can try ingesting coconut oil, it apparently helps, but tastes awful! But if you put it in a smoothie, maybe it will tone it down! But bladder pain is often the first step to IC, so PLEASE check it out just make sure cover your bases that is something you want to catch early!

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Re: 35 and scared out of my mind :(

Post  Kathye10 on Mon Feb 18, 2013 10:15 pm

Coconut oil? Is it good for V or the bladder stuff? You'll think I'm nuts but I looooove the taste of it, so eating it won't be a problem. Since its a fed holiday, I won't get my results until tomorrow. Once I know, I'm going to call and make an appt with the uro/gyno. I def don't want TWO things to deal with! One nightmare is enough. Thank you for your input!!
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Re: 35 and scared out of my mind :(

Post  Alana3 on Mon Feb 18, 2013 11:36 pm

Some people claim our works be careful it makes you break out

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Sorry for your pain..

Post  fleshmannequin on Wed Mar 27, 2013 5:45 am

I felt so sad for you when I read your story, it really hit home for me because I've found myself doing and saying some of the same things you do. I have urethral burning also. For me, I believe I have interstitial cystitis because it occurs with frequent urination. Unfortunately I've never been able to have sex without pain, so I'm not sure what it's like to regret taking things like that for granted.. Since I was little I've had pain with riding bikes, and even taking bubble baths caused much pain for me. I also find myself getting angry. I hate hearing about other girls having sex and enjoying it, I find myself so envious that it makes me extremely depressed and resentful. I also have lost out on a social life due to this pain and the emotional toll that it takes. I also often think why did this have to happen to me, and how it isn't fair. I haven't found any relief for this condition, so I can't offer you advice. But I just wanted to write to you because I really feel for you, and your story seems similar to mine. I hope the best for you and just want you to know you aren't alone in this. Good luck with everything.

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Re: 35 and scared out of my mind :(

Post  Kathye10 on Sat Mar 30, 2013 12:37 am

Hi fleshM,

Thank you for your reply to my post. I am very sorry to hear you have been dealing with this your whole life. You are a strong a brave woman! I completely understand on the sex thing. right now I feel so alone and like I may never be able to have a real relationship with (unless this heals at some point) someone. This is very isolating. Have you be diagnosed?
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Re: 35 and scared out of my mind :(

Post  Loulou on Sun Mar 31, 2013 6:59 pm

Hi Kathye10

I feel for you and can empathise with your story. Especially the seemingly little things like not being able to wear jeans - i remember when my pain was bad standing sobbing in front of my wardrobe not knowing what to wear because i used to live in my jeans! But to give you hope, i never thought i'd wear jeans again but I am!! You just have to keep searching for what works for you. Like you i focussed on the natural path and avoided the drugs, a personal preference, I know they have been a lifesaver for others.

And i think you're right to be cautious about an IC diagnosis. When my pain was at its worst I had urethral burning (but no burning when i was actually peeing if that makes sense), urinary frequency and a horrible achey, crampy pain in my lower abdomen/bladder area (all this on top of the vulval burning). But i didn't have IC. Turns out all this for me was caused by a misaligned pelvis and tight pelvic floor (ie didn't fully relax after contraction) so muscles and nerves down there were in a mess. Chiropractic treatment, pilates and yoga have sorted me out. I also applied coconut oil (vestibule only not inside vagina) which was quite soothing and as it has anti-bacterial and anti-fungal properties i'll keep using it most days even tho my pain has gone (i tried eating it but couldn't stomach it). Like you I also use vitamin D3 daily (i had my hormones and vitamin levels tested and it was a bit low). Don't know if it has had a direct effect on my improvement but part of my 'getting rid of vvd' strategy has been to look after my whole body because i think its all connected and i prefer an holistic approach.

So just wanted to say stay positive and keep an open mind. I've been where you are and it CAN get better.

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Re: 35 and scared out of my mind :(

Post  Sarah001 on Sun Mar 31, 2013 8:56 pm

Loulou I'm so pleased you keep dropping in to give us all hope, not many people would take the time out to bother once they were better so thanks from all of us! x
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Re: 35 and scared out of my mind :(

Post  Kathye10 on Mon Apr 01, 2013 3:51 am

That is great news LouLou, thank you for sharing. I can only imagine when (if) I can put jeans on again! I swear I will cry from joy. How did your VVD start?
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Re: 35 and scared out of my mind :(

Post  Loulou on Tue Apr 02, 2013 8:17 pm

Sarah - if i can give some hope to fellow sufferers then i'm happy Very Happy Its just that i remember how bleak i felt in the early days (eg i spent Xmas Eve evening 2011 at the local hospital seeing the emergency doc I was in so much pain I had a temperature and couldn't walk properly) and i don't want anyone to feel the utter despair that i did now that i know there can be light at the end of the tunnel.

Kathye10 - i'm sure it will a case of WHEN you wear jeans again not IF!
To answer your question - my vvd started in a fairly typical way with what i thought was a thrush infection back in Nov 2011. Tried self medication with fluconozole, seemed to ease for a few days then came back so took another, started with canesten and made appt with GP cos it didn't clear and was getting worse (more burning, achey bladder/lower abdomen). Tests came back negative but she said the thrush might be higher up my vagina so i was prescribed fluconozole pessaries and was still using canesten every day. With hindsight, BIG mistake (I will NEVER use them again). Symptoms just got worse. Had more tests and an ultrasound - nothing. Finally got referred to a GUM clinic by my GP cos i would be seen quicker than referral to a gyn. More tests and was finally diagnosed with vvd (about 2 mths from start to diagnosis so i was pretty lucky to be diagnosed so quickly).

I've had a few thrush infections in my time (i'm 48) but could probably count them on one hand so wouldn't have said i was a chronic sufferer. Did have lots of UTIs for a couple of years in my 20s (that was due to having a boyfriend who was ..ahem...rather large!) but no UTIs since then (that i can remember).

Must admit when it all started i never thought it could be a 'structural' issue with my pelvis (just thought my PF might be tight) tho i've had lower back problems since my 20s. I was convinced it was hormones (cos of my age) or some type of subclinical thrush that wasn't showing up on tests. But i started the PT route due to my pref for non medication (as mentioned before) and its worked but its only in the last few months that i've really become convinced it was my pelvis that was the problem/cause (tho i still have a wee suspicion that my changing hormone levels might also have contributed thru increasing sensitivity).

Now i'm just about back to normal, just getting 1 - 3 days a month when I feel an increased awareness down there (usually just after a period or around ovulation) 'awareness' is the best way to describe it, its not even really discomfort. I think tho that after all the pain I experienced previously (it was 8 - 10 in the early days) i'm probably now just hyperaware of all sensations down there lol!

(Sorry that was a longer answer than i intended!)

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Re: 35 and scared out of my mind :(

Post  Sarah001 on Tue Apr 02, 2013 8:56 pm

Do you know this sounds a bit odd but I thought you'd be in your 20s Loulou for some reason!! You definitely give me hope, I remember our chats in the early days when you first discovered your "frog stretch" helped!! Laughing
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Re: 35 and scared out of my mind :(

Post  Loulou on Tue Apr 02, 2013 9:52 pm

Lol! I'm going to take that as a compliment Sarah - not often I get told that someone thinks i'm in my 20s lol!

And yes, the ol' frog pose - a life saver! Recommend it to everyone!! Very Happy

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Re: 35 and scared out of my mind :(

Post  Kathye10 on Mon Apr 15, 2013 2:38 pm

LouLou, thank you for keeping it "positive"........there are some days I'm bound and determined I will beat this thing and others were I think I'm going to just have to "deal" for the rest of my life with no boyfriend, no sex, old tired maid with her two dogs. I have always had lower back problems so I wouldn't be surprised if that had something to do with it. My dr and I are trying to clear up some bacterial infections hoping that will do the trick, if not, I'm going to have her send me for a PT consultation and exam.

Your story truly gives me hope. I'm so glad you beat this thing Very Happy
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Re: 35 and scared out of my mind :(

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