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» 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

» 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

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: 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


New Member, scared and depressed

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New Member, scared and depressed

Post  Coldchris on Thu Jun 09, 2011 7:04 pm


Hi Everyone:

So glad to have found this site. This is my story. I had an UTI. After UTI, yeast infection, treated by diflucan, cream and OTC monistat. Did not get better. Many trips to dr. Treated shabbily. Went to Seattle (I live in Alaska) to a specialist who said I had a hyperimmune response to the yeast and had swelling and inflammation. Got some cream to use 2xs a day for 6 weeks to help get it in check. Mid way through, got an absessed tooth and had to go back on antibiotics (still on them). Had antibiotics (pro biotics to balance them), vicodin, advil, tooth numbing injections, etc. Urine was like acid I bet and really irriated the heck out of inflammed vestibule. Sitz baths and keep on the cream. Started using domeboro sitz baths but I think this may be trying out the rest of my skin. (Has anyone tried Aveeno?) I am struggling with this and feels like it just keeps coming. I'm scared, depressed and feel very alone. Go back to specialist next Wednesday. Did anyone else feel so overwhelmed and depressed?
Coldchris




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Re: New Member, scared and depressed

Post  jules on Thu Jun 09, 2011 10:58 pm

ColdChris, your feelings are very normal. I can speak for myself and for the women i have been friends with online who have Vulvodynia. we have all felt depressed and hopeless at times. It is very difficult to live w/ chronic pain. It's discouraging to have to go from one doctor to the next to try to first find out why you have pain and then for treatment options. The good news is that there are a number of treatment options for the pain. We all have different results from meds., creams, gels, and other treatment options. Your disorder started the exact same way that mine did. I thought i had a UTI, took antibiotics, then months of treatment for a yeast infection i never had. I want to warn you about creams. If your pain continues (bad burning, bright red skin) or increases, i would recommend that you stop using the cream and talk w/ your doctor. Creams have alcohol in them. This can burn the skin. Even gels or ointments can irritate the skin. I believe the creams and gels i used made my condition worse. I hope your cream helps you.

I have tried many treatment options. As you will see many of us see physical therapist. I am going to start acupuncture next week. I'm also on three different meds. along w/ percocet for the pain. a therapist is recommended just to talk w/ someone about the pain and how to manage it. if you are feeling depressed, you are not alone. make sure you tell others around you how you feel. don't go it alone, reach out and ask for help and support, glad your doc gave you some pain meds. they also use some anti=depressants and anti-convulsants to deal w/ this pain disorder. I'm on Gabepentin, lyrica and Cymbalta. i still struggle w/ pain, but it would be unbearable w/out these meds. take care...ttysoon.

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Re: New Member, scared and depressed

Post  Coldchris on Thu Jun 09, 2011 11:57 pm

Thank you soooooo much. You don't know how much a little light shines so bright in such darkness~! I just have to keep telling myself I will get through this, I will get through this. You are right on about the creams. I should have said ointment. He gave me a steroid ointment to help with the inflammation. I see him again on Wednesday (another trip to Seattle from Alaska). I am starting my period today and think this may have contributed to this darn flare up. I call it my angry, angry vagina. Did you get flare ups around menstruation?

Coldchris

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Re: New Member, scared and depressed

Post  jules on Fri Jun 10, 2011 11:44 pm

how far is Seattle from your home? i'm glad you're connected to a specialist. it sounds like you're on the right track. to answer your question, yes...i always get a flare up prior to my period. there has to be some connection w/ hormones because this seems to be common in women w/ V. I usually have more pain for about a week before my period and maybe one day into my period or so. i have generalized vulvodynia. pain all over the vagina. others have the vestibulodynia...pain in the opening and inside the vagina. i am able to use tampons w/ no problem. i can also have sex, but generally don't want to because my vulva is frequently "on fire." Are you able to sit w/out pain? i have to sit on a foam donut everywhere i go. my goal is to be able to sit on a chair someday. what a goal, huh? i try without a cushion once in awhile and pay for it. right now my pain is fairly bad. another thing i can't do is work out. after about 5 mins, my vulva burns. the good news is that there was a time that i was able to while on meds. sometimes you find meds that work or a combination of meds that work and then they stop working so you have to add a new med or adjust the dosage. there are good times and not so good. Hey, i'm from Minnesota...another cold state. we have the cold in common. a couple days ago it was 103 degrees here and today it was in the high 50's, now 60. Did you grow up in Alaska? I hear it's beautiful!

jules

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Re: New Member, scared and depressed

Post  Mouse on Sat Jun 11, 2011 3:08 am

Hey coldchris, welcome!

As Jules said we've all had desperate times. It really helps to reach out and also find a therapist who can help you make sense of all this.

Good luck with the specialist. A pain clinc is a great place to find answers also. Be kind to yourself, it's not easy having a chronic pain condition that's also not that socially acceptable. A pain in your leg would be a much better option!

Take care, we are all here to help Smile

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New member scared and depressed

Post  ria on Sat Jun 11, 2011 7:41 pm



Hello Coldchris,

Its great having the information from all the Ladies on this website. I am sure you have read through the posts , great advice and its good to know we are not on our own. Good Luck with the specialist.
Take care
Ria











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Re: New Member, scared and depressed

Post  noni on Sat Jun 11, 2011 8:52 pm

Hey coldchris,

Its absolutely normal to feel depressed and totally alone in this. This condition, and partly because of its nature, is very isolating. Theres nowhere to go when you get a terrible flare up. Go to the ER and they will look at you as though you are a basket case. To many doctors vulvodynia is just a nuisance. First, they havent got a clue how to treat or manage it and secondly they dont understand the intensity of the pain. This isnt just regular pain its nerve pain. Which, by the way, is difficult to treat...same as diabetic neuropathy.

Its so awful that each day is such a battle for us. We fight against the physical pain and we fight against all the negative emotions and thoughts that come along with having chronic pain.

coldchris, feel free to vent on here anytime.

noni
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Re: New Member, scared and depressed

Post  Sarah001 on Sun Jun 12, 2011 12:07 pm

It can be neuropathic pain but isn't always, it can also be completely muscular or referred pain from another area or purely mechanical from postural problems or even an undiagnosed skin condition, that's why the medication aimed at neuropathic pain often doesn't help and why Amy Stein approached Dr Andrew Goldstein years ago to suggest physio rather than nerve meds and has had good results. It's different for all of us and also why the book When Sex Hurts is a good one to read because it helps to establish the source of the pain rather than just writing it off as unexplained. That's not to say the nerves aren't involved, they are involved in all pain as they transmit pain signals to the brain but if this was always neuropathic pain there wouldn't be the silly non-diagnosis of "vulvodynia" which doesn't mean anything except "pain in the vulva" and medication for neuropathy would work for all women with V so there's be no mystery involved.
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Re: New Member, scared and depressed

Post  Coldchris on Mon Jun 13, 2011 5:09 pm

Thanks to all. The flare up has greatly decreased and I almost feel human again. I wonder when the next bout is going to come, but try to be in the present, that it is not happening now. Thanks for all the posts. It was a really, really rough time.

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Re: New Member, scared and depressed

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