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» 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

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» 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


22 years old, unhappy and miserable

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22 years old, unhappy and miserable

Post  shay on Thu Dec 30, 2010 1:46 am

HI MY NAME IS SHAY AND IM A 22 YEAR OLD COLLEGE STUDENT WHO IS MISERABLE AND UNHAPPY BECAUSE FOR THE LAST 8 YEARS I HAVE BEEN BATTLEING HEALTH ISSUES. TO BEGIN I HAVE AT LEAST 15 SURGERIES FOR HYDRANTIUS SUPPRATIVA ( HOPEFULLY SPELLED RIGHT LOL) WHICH HAS CALL ME TO HAVE TO MAJOR SURGERIES IN MY GENITAL AREA THAT HAS LED TO MULITPLE YEAST INFECTIONS, CREAMS, PILLS AND DEPRESSION. I HAVE BEEN TESTED FOR EVERYTHING WITH NO KNOWN CAUSE FOR THE STINGING, ITCHING AND PAIN AFTER RESEARCHING MYSELF I BELIEVE I SUFFER FROM VULVODYNIA AND MAYBE SOMETHING ELSE THAT AFFECTS THE CLITORIS HOOD WHICH SEEMS TO CAUSE ME SOOOOOOOOOOOO MUCH PAIN. I HAVE BEEN WANTING TO POST BUT WAS AFRAID OF DEAD ENDS AND NO SOLUTIONS BECAUSE I HAVE BEEN HOPEFUL AND DISSAPOINTED SO MANY TIMES. I AM ONLY 22 AND CANNOT REMENBER A DAY WHERE I WAS COMPLETELY PAIN FREE DOWN THERE. SO IF YOU GUYS HAVE ANY WORDS OF ENCOURAGEMENT , TREATMENTS AND QUICK FIXES FOR FLARE UPS BECAUSE IM HAVING ONE RIGHT NOW......

PLEASE HELP
CANT KEEP LIVING LIKE THIS

LOVE SHAY

shay

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Re: 22 years old, unhappy and miserable

Post  katemate on Thu Dec 30, 2010 11:04 am

Hi Shay

Sorry to hear about your troubles, there really is nothing worse then vagina related health issues!

Firstly, I hate to say it but there is no quick fix for Vulvodynia, But what I have done has helped me, it took a few weeks to a month and a half to notice improvement, but it has been such a massive improvement, have a look at my thread http://vulvodyniasupport.forumotion.net/t201-what-helped-and-practically-cured-my-vulvodynia

It has details about what helped me (also scroll down for my other reply which goes into further details), my vulvodynia isn't totally cured but I have now mainly totally pain-free days, after having Vulvodynia for about a year, I am SO much better now. I came to this forum to spread the word about the things that helped me, in fact I feel bad for not posting sooner, as for the last few months I have been much better, but it shows I have been enjoying life again! And you will too!

Hang in there, Shay,

Kate xx


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Re: 22 years old, unhappy and miserable

Post  Sebby (Admin) on Thu Dec 30, 2010 2:23 pm


Hi Shay and welcome to the forum.

Please dont give up as you can see from Kate's post there is hope for us to gain much pain relief!!

It is a long road of try this and try that and oh dear that didnt work etc etc and can leave you feeling soooo disapointed and fearful that there is no soloution. But there is and there must be a solution as women are getting relief from this. Its just about getting all the info and support you need and seeing what works for you.

As for flare up fixes, if im in a lot of pain I do take co-codermol just to take the edge off but im quite senstive to opiates so the main reason it takes the edge off its because im all drowsy! lol but if the pain is bad then I do what I have to do. I take 15mg co-codermols which do have to be prescribed by a dr. This is just for the bad days and is not a long term fix. Also oddly enough I seemed to get some relief with my last flare up with using nappy cream!! it seemed to soothe my skin.

On flare up days, if you are indoors, wear a long skirt with no underwear so nothing is touching the vulva area. Relax and treat yourself. Eat some chocolate and rent a good movie. Chat to someone with a sympathetic ear..have a cry if you need too. This psychological release does help. I find bad flare ups are only temporary and eventually calm down so keep telling yourself this! "This too shall pass" its my favorite quote

Once you find a long term treatment that gets to work then these flare ups will lessen.

Im going to try the dilators that Kate suggested

Take care and come to us for support when you need it

Sebby
xxx
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Re: 22 years old, unhappy and miserable

Post  jules on Fri Dec 31, 2010 2:10 am

Hi Shay,

I'm so sorry you have been going through this for so long. I have Generalized Vulvodynia. My pain is all over the Vulva and less so in the Vagina. These are the things that may help you: First get yourself to a pain clinic. The doctors there know how to treat nerve pain. Other ideas:

Put gel packs in the refrigerator to cool them. When using a gel pack on your vulva, put a wet paper towel over the gel pack and apply gently to the Vulva. If you are having burning pain, this will cool down the area and give you some relief. Before i started on meds, i was using this method 6 times a day and i work full time so it got tricky during the day.

Medications can be very helpful. I am on Gabepentin (neurontin) I am on the highest dose 3600 mgs. I did get some relief from about 2000 mgs but i kept on going up in the dose to get more relief. Gabepentin is used frequently for this nerve disorder. It is a anti-convulsant. I then added Lyrica to the mix. Lyrica is used for people who have nerve pain, such as Fibromyalgia. Just adding 100 mgs. made a world of difference for me. I am now on 150 mgs. I also recently started Cymbalta. This medication is used for depression (which i would guess most of us have). I am on 20 mgs. This medication also helps w/ pain. over the past month, i have noticed the least amount of pain ever. Several months ago, i had to stop working out because even 10 minutes of cardio would cause me to have burning pain. Now i am working out regularly and as long as i don't over do it..i can work out w/ no problem.

For sitting, i use a foam cushion (hole in the middle). You can order these online. I always sit on my cushion at work and home. I really can't sit on a chair for more than about 10 minutes w/out feeling my pain come back. I can have sex and don't typically have pain afterward. I'm not a sexual dynamo though.

I do take Vicodin for pain from time to time...especially if i feel the burning start up. I do have burning pain sometimes...but absolutely nothing like the past.

I did start physical therapy, but i stopped. i tried the dilator thing and did not appreciate the pain it brought me. my therapist determined that i did not have much tension within my pelvic walls. i wasn't tensing as I used to because my pain had diminished.

These are the things that did not work:

I had two spinal blocks w/ no results -this is pretty typical from what i hear..but i wouldn't cross it off your list.

If i were you i would not use any creams, lotions or gel. EVERYTHING i put on my vulva stings. i believe all of the creams that i was prescribed for my vulva pain made it worse and made my condition worse.



I know how you feel about not wanting to get your hopes up. I have had my hopes dashed a number of times. But you will find relief. Its worth it to take the journey. You don't have to live like this. I decided i wouldn't give up until i found relief...and i have. It's not perfect but its 90% better

good luck and keep us posted.

Jules cheers

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You're not alone

Post  [Sara] on Sat Jan 01, 2011 1:59 am

Wow, I just found and joined this site tonight and am so relieved there is another 22 year old dealing with this! Our symptoms aren't exactly the same but I wrote about mine in the My Story section. Basically I have intense burning and rawness upon insertion, burning while peeing, pain during bm's and lower back pain. I can't sit for long periods of time. This is frustrating because I am still a newlywed (married in June of '09), and the first 10 months of our marriage I had no symptoms. Prior to this, I never had problems using tampons or peeing or anything. April of '10 was when it all went downhill.

If it helps, I'm here for you and wish I had an answer for our problems. Take care, Shay. I'm going to try and get on here regularly. :]

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having a terrible week

Post  shay on Mon Jan 03, 2011 4:04 am

thanks everyone

i really appreciate the advice and im currently in bakersfield and will see a specialist on wednesday so hopefully that will lead to some relief and im also currently seeing a physical therapist an will see how that goes but im am having really bad flare ups that include rawness, itching and burning and i need some sort of relief soon because it is taking away from who i am and taking control over my life.

@sara ium also currently a senior and my quarter starts back on the 6th so im am trying to prepare for the stress of school while dealing with this private issues lol ............. heres my email if you wanna chat msporshay@yahoo.com

@jules are there side effects to the pills, if so are there better than the issues of vulvodynia so you deal with it.

@admin what is nappy cream

@kate i will be looking up your post for some solutions i havent tried

shay

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Re: 22 years old, unhappy and miserable

Post  jules on Mon Jan 03, 2011 4:18 am

I have not had any side effects from my medications. None on gabepentin. i gained a little weight w/ lyrica but, i wasn't working out and was eating and drinking alot. i have sense lost 5 pounds and i am back working out. so can't blame the lyrica. years ago i tried amitriptyline. i did have side effects. i was exhausted and felt like i was in a dream for 2 weeks. i went off that. it was for headaches. i have been very lucky w/ side effects. you may want to ask for a vicodin for the pain. it does help if you can catch it before it gets real bad. also try cool gel packs left in the refrigerator. that cools the area. good luck. i'll send you my e-mail. are you on our facebook page?

jules

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Re: 22 years old, unhappy and miserable

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