Log in

I forgot my password

Latest topics
» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 1

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

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: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4


Big Hugs and Hope

Go down

Big Hugs and Hope

Post  noni on Mon Jan 10, 2011 10:56 pm

hi ladies

So my nightmare began all of a couple months ago. The burning, itching, and general discomfort. My search for help started with me going to the walk in clinic and them sending me to a gyno. He basically just dismissed me and gave me yeast antifungals and cream, you all are familiar with this. Then when i returned two weeks later still complaining...he gave me diflucan. Obviously that didnt work. Then got tested for stis those came back negative. Have probably seen five medical professionals, however the last one a dermatologist, upon examining me immediately diagnosed me with vulvodynia, and now i am waiting for my next referral to a vulvar clinic.

I am very frustrated and feeling alone. I can no longer ride my bike, walk comfortably, sit, or feel like a normal person. Also being told I was crazy or a former sexual abuse victim, has not helped my mental state. I have no one to confide in. Going to work is horrendous as I am constantly being reviewed by supervisors and having to interact with people in a relatively chirp manner, all the while in terrible discomfort.

Ladies help me out, could i simply have a terrible allergic reation to a soap i used in the past, as in this is just a skin thing, or is that what vulvodynia is...f-ed up vulva skin tissue.... or is it my nerve endings...
do u think the vulvar clinic will finally help me...what if they again say they dont see anything

I DO NOT like being acutely aware of the girl bits. This is what people dont understand, its like if you have a bad knee, then you are constantly aware of it. Same with this b.s.

PS : i am so sick of these quacks prescribing cremes that only provide temporary relief at best. I am terrified of putting ANYTHING down there. The cremes are nasty and thick and greasy, just gross.

Please: Any words of wisdom for me, especially when i am on the rag, i just feel so much worse, maybe its my mood or maybe something else. The pads feel like sandpaper down there....


Thank you for reading. tongue

avatar
noni

Posts : 242
Join date : 2011-01-10
Age : 30
Location : Ontario

View user profile

Back to top Go down

Re: Big Hugs and Hope

Post  Mouse on Mon Jan 10, 2011 11:25 pm

Hey there, well you are in the right place! We are all going down the same road and have mostly been treated like fools by the medical profession. Over the Christmas break I ran into the gyny (twice! I'm avoiding that cafe now) who told me to see a sex therapist and take evening primrose. She treated me like a fool and all via email or her bloody receptionist because she wouldn't give me an appointment! Oh that was until I got fed up and asked for a referral somewhere else. She then needed to see me and charged me $90 for the pleasure of saying she had no idea what to do and she'd never seen it before. Pick up a book lady!

The vulval clinic is a great place to start, that's where I found my new improved specialist. She specialises in vulval pain... I think I love her... no crazy fool comments from her.

I don't think there is an easy answer but there are a number of things you can do. First, don't use soap down there at all. Wear cotton underwear or none at all when you are at home - up to you whether you do it when you go out I suppose! Sebby has posted a list somewhere, have a hunt around. A few of us are trying the no sugar/yeast free diet. Alcohol and coffee are triggers for me so I try to avoid them.

Being constantly aware of your girl bits is a curse, wouldn't it be much easier to have a headache? I'm having plenty of those as well - caffeine withdrawal!!! Aaahhhhh! I haven't been able to cross my legs since this started but I can now sleep in most positions. When it kicked off I could only sleep on my back.

I have a different sort of V but there are others who have the same and we all have plenty of advice.

I'm pretty keen on therapy, strange because if she'd given me that advice to my face I proabably would have hit her. Having someone to talk to is REALLY important.

Also check out the FB group, if you want to join you need to give sebby your details. It's completely private and doesn't post to your wall ... pheww!!! We are a small but perfectly formed group and it's lovely to put faces to names.

Good luck and welcome
Vicki


Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

View user profile

Back to top Go down

Re: Big Hugs and Hope

Post  noni on Mon Jan 10, 2011 11:45 pm

Thanks for your support and kind words of encouragement Vicki. Yes I will definitely ask the doctor at the vulvar clinic about support groups in my area. I think the psychological impact is just as, if not more, influential on my well being. The general population has never ever heard of this. I never heard of it before my journey began. So I need to talk to women who actually KNOW this is REAL hello!!!

Yeah...I dont know what worries me more about my next appointment, being told I have nothing (as per usual) or being told I conclusively have vulvodynia by a vulvar expert.

I dont know anymore.

All I know is there's something wrong.

Thanks again this is very much appreciated. Wink
avatar
noni

Posts : 242
Join date : 2011-01-10
Age : 30
Location : Ontario

View user profile

Back to top Go down

Re: Big Hugs and Hope

Post  Sebby (Admin) on Mon Jan 10, 2011 11:57 pm


Welcome to the forum!

I think Vicki means this link http://vulvodyniasupport.forumotion.net/t171-secret-suffering-website-tips

A few good tips I got from another site.

There are a few theories on the causes of Vulvodynia, some think its pelvic floor dysfunction, nerves, skin disorder etc...

I seem to think it could be a little of all..which is often why a multidiciplinary approach seems to have better results.

For instance I know my skin is sensitive so I do not use any products down there, no purfumed products nothing apart from water and lube to use with my dialators

Also as I mentioned Im going to get refered to a womens physical therpist and am also doing home dialators as well as biofeedback very soon.

I am waiting to see if the pelvic floor route yields any results...

The Vulval clinic is a great place to start, also get refered to a pain clinic and see a women's physical therapist..may as well get it all rolling!

Good luck and take care

Sebby
xx
avatar
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 37
Location : London UK

View user profile http://vulvodyniasupport.forumotion.net

Back to top Go down

Re: Big Hugs and Hope

Post  [Sara] on Tue Jan 11, 2011 4:06 am

Hi noni cheers

You came to the right place. I found this forum a couple weeks ago and it has helped me so much. It's so much better to talk about things instead of internalize them (that's what normally gets me depressed about everything). My symptoms are a little different than yours; I don't have the itching and my therapist thinks my symptoms are from pelvic floor dysfunction. My pelvic floor is almost constantly in spasms, it burns like a UTI when I pee, and with penetration I feel the rawness, burning, and stabbing pains. Sometimes I take muscle relaxers to help relieve the spasms (sometimes they are very painful), and my therapist is having me do pilates type exercises to stabilize muscle groups surrounding my pelvic floor; it seems to be helping make penetration less painful now. I also starting using dilators (just put one in and leave it for 5-10 minutes) and I think that's helping as well.

It's funny you mention not being able to ride your bike anymore, because we think that's what caused my vulvodynia. My husband and I went bikeriding a lot this past spring, which was when I started having the symptoms. I hadn't been bike riding since I was in Jr. High and never had any problems with it then. My therapist thinks that my floor suffered trauma from the recent bike riding. I think it's safe to say that I will never ride a bike ever again, even if I ever do get cured of this horrible condition. Laughing

[Sara]

Posts : 26
Join date : 2011-01-01

View user profile

Back to top Go down

Re: Big Hugs and Hope

Post  noni on Fri Jan 14, 2011 3:13 pm

I just feel for you guys so much. Keep the faith.
avatar
noni

Posts : 242
Join date : 2011-01-10
Age : 30
Location : Ontario

View user profile

Back to top Go down

Re: Big Hugs and Hope

Post  Sarah001 on Fri Jan 14, 2011 7:28 pm

This is to [sara], can I ask what exercises specifically you are doing around your pelvic floor? I'm heading in that direction too and find if I exercise certain muscles around the pelvis it helps relax the pelvic floor off but areas I'm struggling to strengthen without upsetting the pelvic floor is the transversus abs and multifidus because obviously they co-contract with the pelvic floor. I can't do adductor work as mine are tight and it makes things worse so mainly I do glute medius, glute max and try to contract the transversus abs without the pelvic floor but so far I haven't been very successful at that. I was taught originally to initiate a local system contraction from the pelvic floor so I'm struggling to separate it now! Do you do TrAbs work and manage to keep your pelvic floor quiet? If so any hints on how you were taught to do this?
avatar
Sarah001

Posts : 1163
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

Re: Big Hugs and Hope

Post  [Sara] on Sun Jan 23, 2011 10:08 pm

To Sarah001-

When I have access to a scanner I will scan my exercise sheets for you. Here are the titles at the top of each exercise:
  • Rib Cage Arms
    Twist
    Parallel Side Lean
    Swan Prep
    Single Leg Kick
    Prone Single Leg Raise
    Side Kick
    Side Leg Lift
    Inside Leg Lift
    Over/Back: "Hot Potato"
    Clam
    Bridge


When I did biofeedback therapy we found out that my abs abnormally contract and also have spasms. My pt's goal is to get the muscle groups stronger so that they work together, instead of against each other. The muscle tissue of my abs is very tight and still feels like I'm flexing even when I am at rest. I have trouble separating my abs from my pelvic floor as well when doing contractions, so I'm afraid I don't have any tips on how to separate them. Neutral


[Sara]

Posts : 26
Join date : 2011-01-01

View user profile

Back to top Go down

Re: Big Hugs and Hope

Post  Sarah001 on Mon Jan 24, 2011 7:54 pm

Similar kind of things to what I'm doing, trying to correct muscle imbalances. Are you what physios term a "breath holder"? I used to do that all the time and grip with the upper abs so they always looked contracted, took alot of effort for me to stop that particular faulty pattern too! I really struggle to avoid the pelvic floor with the Tr Abs work, my pelvic floor just leaps right in there and my abs don't do much, it's very frustrating but I expect practice is the only way to get to grips with it.

Immediately after an exercise session I feel noticeably better but it doesn't last at this point but at least it's motivation to keep going. I'd be very interested to see the exercise sheet, I'm always on the lookout for more exercise to stabilise my pelvis.
avatar
Sarah001

Posts : 1163
Join date : 2010-06-11
Age : 44
Location : UK

View user profile

Back to top Go down

Dermatologist in Melbourne Cured my Vulvodynia

Post  angelique on Tue Feb 01, 2011 10:48 am

Please read the information I have posted on the Dermatologist and Advantan Fatty Ointment, I was in the same boat with the very harsh soaps, it destroyed the vulva skin and I was in so much pain, the Dermatologist prescribed the ointment for skin healing and Allegron 10ml for pain relief. Perhaps speak to you doctor about these medications and going to see a dermatologist.
avatar
angelique

Posts : 9
Join date : 2011-02-01
Location : Melbourne Australia

View user profile

Back to top Go down

Re: Big Hugs and Hope

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum