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» Vestibulectomy
Yesterday at 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


nothing is working!

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nothing is working!

Post  kellybeth on Wed Aug 08, 2012 10:11 pm

hi all first off i would like to say how glad i am to find a website like this.
i have an 8 year old daughter,at the age of 3 she started having complaints with her down below. after countless times visiting my local gp i was told the same thing,she has thrush or sistitis (sorry about the spelling) she would be up in the night crying saying it was burning and stinging. this carried on untill she was 5 years old then things got worse to the point where she was pulling her hair out in pain screaming for me to help and to take her pain away. it wasnt until last year she was finally referred to a specialist at my local hospital. we tried all types of remedies such as creams,gels,meds,ice packs nothing worked! she finally referred my daughter to uclh where we was told bethany had extremely sensitive nerve endings she referred my daughter to great ormond street to start pain management which is where we are now.this is where we finally got a diagnosis that we had waited 5 years for,it is vulvodynia. her consultant there has put my daughter on 5mg of amitriptyline this also did not work. she had another appointment with pain management 3 weeks ago and he has now upped her tablets to 10mg,this also dont block her pain. she is still up nearly every night for hours on end crying and uncomftable. i just feel like i am hitting a brick wall all the time. i hate seeing my 8 year old like this and im really worried for her future. sometimes it just seems these doctors just dont understand Crying or Very sad
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Re nothing is working

Post  Sunflower82 on Fri Aug 10, 2012 7:52 am

Hi,
I'm too sure what to suggest, but just wanted to say that this is a horrible condition to have and I feel for you and your daughter as no 8 year old should have to go through this. In term of medical professionals I think everyone will have a story to tell. It took me over ten years to get a diagnosis. I had frequent acts of cystitis when I was young between 8-12 year howwever all I needed was a salt bath and it would go away, shame that doesn't work anymore. Over the last year I have seen a women health physio who has been really helpfull, as your daughter is so young this may be difficult as it does involve internal massage, but she did look at other muscels eg my tummy muscels were really tight which I had no idea, I'm also seeing a chiropractor who is running a study about vulvodynia. Which is interesting as she will also ask about your birth and development as a child. My pelvis is not on the right place and a few other things. Other option is to look at diet is she eating foods which are acidic, does she drink squash or fruit juice, fizzy drinks ?

Hope this helps

Kt

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Re: nothing is working!

Post  kellybeth on Mon Aug 13, 2012 11:00 pm

thank you so much for the tips i will defo give them a try. and thank you for taking your time to writ to me, really appreciate it

kelly xx
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Re: nothing is working!

Post  ButterflyLiz on Tue Aug 14, 2012 9:53 pm

Hi Kelly,

I am so sorry your daughter is having to deal with this condition. I hope you have a breakthrough soon.

I thought I would tell you the things that have helped me in case they are any help, though I guess there are limits on the amount of meds you can give kids, I’m afraid I don’t know about that side of things.

So I take 150mg lyrica (also known as pregabalin) per day and this helps to keep my pain at a manageable level. Before this I was on amitriptyline and that didn’t help me.

Also I use a topical anaesthetic down there at night to help calm the nerves, I use instillagel which is normally used to insert catheters and I get that on prescription.

Hope you find something that works soon

xx
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thank you

Post  kellybeth on Thu Aug 16, 2012 11:03 pm

thank you very much liz i will look into the cream xx
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Re: nothing is working!

Post  Loulou on Sun Aug 19, 2012 9:55 pm

Hi Kelly - it's heartbreaking to read your story. I so hope your daughter can find some relief soon.

Similar to sunflower's comments, I found a chiropractor really helped me as my pelvis was misaligned. Maybe worth checking if your daughter has an alignment problem somewhere in her back or pelvis??? (this might possibly be a cause of over-sensitive nerves as bones out of line can effect surrounding muscles, ligaments, tissue and ultimately nerves?? - its all connected)

Also I found in the early days when my pain was really bad that accupuncture helped. This might be scary for a child but i found the needle insertion really didn't hurt and it did seem to help.

Hope you find something that works.
x


Last edited by Loulou on Sun Aug 19, 2012 10:00 pm; edited 1 time in total (Reason for editing : explain why nerve issues might link to skeletal issues)

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Physio

Post  bCherie on Tue Aug 21, 2012 2:17 am

Hi Kelly,

It sounds a lot like it might be caused by 'nerve strain'/internal organ strain.
If creams and tablets etc have no effect. This was my experience.

Basically your internal organs can be out of alignment. If they get pulled up and back this can cause all the never endings in the pelvic region to be 'pulled' up and back too as they are all connected to your uterus. And this can cause all sorts of horrible nerve reactions (burning and stinging around the vulva AND deep stabbing pains in the vaginal passage and uterus). I often feel likke my 'insides' want to drop out too which is a painful sensation.

This can be cause by bladder infections and kidney stones BUT as in my case it can be caused because you are walking, sitting and going to the bathroom wrong (I hold muscle tension in all the wrong places something that can be re-taught). If this is the cause of your daughters symptoms a vulvadynia trained physio should be able to relieve her symptoms and teach her how to use her muscles right.

I don't know if you have physio's in america (perhaps you call them chiropractors) but my physio was trained in vulvadynia treatment in the USA so if you ask questions relevant to my comments above you should hopefully find someone that can help!

As a note similar problems can be caused by having a few discs in your lower spine out of alignment.
OR
You can also have pelvic floor pain (that feeling of insides dropping out) caused by food allergies causing damage to the digestive tract. I had a girlfriend with a little girl with similar problems that was caused by an allergy to salicylates in food.

Good luck finding answers for you little girl poor darling!

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Re: nothing is working!

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