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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


feeling devastated- Letter from Gyno

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feeling devastated- Letter from Gyno

Post  raffles32 on Mon Nov 05, 2012 2:53 pm

So I was left devastated after my trip to the Gybo but recieved the letter that put it in black an white today ...

" Vestibulitis is a condition that no-one knows why it is there ..this is a condition that medical medicine is not good at curing. I am afraid I cannot help further"

I know there are many positive stories n here..but there are so many negative ones, I felt slightly hopeful at the surgery option - but the gyno recommended against it saying it doesn't work and after reading about it , it seems it can make it worse.

I am literally not sleeping and feel constantly sick because I know this spells the end of my relationship- the lack of sex has already taken its toll but the concept of no cure is the final nail....

SO depressed :-(

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Re: feeling devastated- Letter from Gyno

Post  BpCookie on Wed Nov 07, 2012 9:01 pm

You poor sweet heart. I'm depressed also. Every now and then I think about surgery but I want to exhaust everything first. I think I'm starting to run out of options too.

So sorry to hear about your relationship. Buy the jerk a blow up doll and kick him to the curb.

Hang in there and I will try to do the same. hugs
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Re: feeling devastated- Letter from Gyno

Post  cba321 on Thu Nov 08, 2012 7:37 am

I didn't get much help from general gynos as well - one told me I had an anxiety disorder the other said she didn't know anything about it but would find out where to refer me, which she did and I found help that way. I see a gyno who is a prof and specialises in vulvadynia and he has been helpful but a general gyno - not helpful!

However gynos aren't the only health professionals - have you tried a dermatologist (google search your area and see if there is one that specialises in vulva skin) or physiotherapist who specialises in pelvic pain

I have found health professionals who understand it and have options for me, but I would recommend not going to a general gyno or general physio or any type of specialist unless they have a speciality in vulvadynia - it isn't especially common so I wouldn't listen to anything a general gyno has to say, they don't have the time to go through all the research or attend forums and conferences on new treatments for this condition - that gyno should have rang his/her contacts and found somewhere else for you to go, not just shoved you in the too hard basket - very unprofessional! Perhaps contact the receptionist and ask her to get the gyno to pass alternate contacts, i'm sure you have paid the gyno quite a bit of money!

I'm going to see the professor next week about possibly trialling an asthma drug which apparently helps with nerve pain...

There are health professionals out there looking for the answers, but you have to find the small number of them that are doing it unfortunately

Hope you get some answers Smile

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Re: feeling devastated- Letter from Gyno

Post  BpCookie on Thu Nov 08, 2012 3:31 pm

Cba321, Your right. There are other specialists out there that can help. Most Gynos don't have a clue. I found a Vulvodynia and Lichen Simplex Chronicus specialist in my area, by googling it. Unfortunately she was at a loss when it came to my issue. She was able to help her other patients but my V and LSC was resistant to all the treatments that she tried. So I started looking for different kinds of specialists like a Dermatologist, Nerve specialist and pain specialist.

I will just keep on looking for that one Dr. who can help. I know he/she is out there some where. Smile Let us know what kind of med. you will be trying. I have asthma so I'm curious as to what the med. is called.
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Re: feeling devastated- Letter from Gyno

Post  jen007 on Thu Nov 08, 2012 11:35 pm

raffles32,

I've heard this story from other women before and have experienced it myself. It's very sad when the doctor you've been seeing can't seem to help fix your problem. I've had PVD (provoked vestibuldynia) for 5 years now and have had to see about 4 doctors before getting the proper help. I would like to let you know that I had exhausted all treatments and had no other option but to get the surgery. I want to let you know that getting a vestibulectomy can be successful. I had my surgery on July 6, 2012 and so far so good. I will be seeing my surgeon for a follow up next Friday.

This is also for cba321

Like I said above it took me ages to find the right doctor/gyno/specialist to help me out. I had seen a physician, a gyno, and an internal specialist. Non could help me. After the internal specialist I didn't know where to go. Then my aunt had mentioned calling around to local hospitals and see if they have any specialists. I wasn't hopeful, but sure enough the first one I called had a specialist. I'd suggest calling a hospital maternity ward. They usually have gynicological specialists that could help you (that's how I found my main gyno...shes amazing and helped me find a good surgeon!).

Hope I could of been some help to you ladies! Stay strong! And let me know if you have any questions!

-Jen

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Re: feeling devastated- Letter from Gyno

Post  cba321 on Fri Nov 09, 2012 10:13 am

Hi BpCookie

The medication I am possibly going to try is montelukast or singulair is the brand name in Australia. I believe it is mostly used for childhood asthma, but is also used in adults. I have found a research article on it (see below) and I am going to see a professor next week to discuss this option with him, the physio I see told me about this new treatment the professor is trialling. I am currently on endep, it dampens the pain but midly and has lots of side effects that completely outweight the mild benefits. My understanding of the drug is that it works on the "mast cells" and stops them releasing a chemical, that in turn causes inflammation which is irritating the nerve endings. For asthma it stops the inflammation occuring which is blocking the airway but must be systemically working throughout the body. In saying that endep has lots of side effects i'm sure this one will too, but here is hoping it helps!

http://europepmc.org/abstract/MED/17977165

Jen that is really great that your treatment has been successful, always great to hear positive stuff Smile


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Re: feeling devastated- Letter from Gyno

Post  BpCookie on Fri Nov 09, 2012 6:05 pm

CBA, What Singular mgs will you be taking? Is it a pill or inhaler? I used to be on a daily dose of Singular for my asthma but the dosage to treat V may be different. Hope it works for ya. Smile
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Re: feeling devastated- Letter from Gyno

Post  cba321 on Fri Nov 09, 2012 8:29 pm

Hi BpCookie, not too sure what the dosage will be as yet but I believe that it is in a tablet form. What dosage did you used to take for asthma? I believe also that it is used only for localised or PVD as well, not for women who have the generalised constant pain, but I don't know too much as yet

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Re: feeling devastated- Letter from Gyno

Post  BpCookie on Sat Nov 10, 2012 3:52 am

CBA, I can't remember what the dosage was, its been a long while since I have used it. It never really worked too well for my asthma but I would be willing to try it again for my V. Let me know how it works out for ya. Wishing you the best.
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Re: feeling devastated- Letter from Gyno

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