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» Can you guys tell me your experiences with diflucan/Fluconazole?
Yesterday at 1:29 am by ryn207

» So frustrating!!
Yesterday at 1:25 am by ryn207

» Looking for suggestions or encouragement
Yesterday at 1:19 am by ryn207

» Looking for a friend..... and new problems
Mon Jan 15, 2018 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

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 …

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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 …

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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



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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

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Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

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Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Questioning Surgery

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Questioning Surgery

Post  tandaschroeder on Wed Oct 31, 2012 2:52 am

Hey everyone! I'm not quite sure how this necessarily works, so I hope I get some replies. I am a young female who got married nine months ago. I wasn't sexually active until marriage. Now, I am completely unable to. It is exhausting and actually makes me depressed. It took me awhile to figure out what I had. Now that I have tried Coconut Oil, cream, and other things, I am not questioning surgery. My main concern and question is: IS IT EFFECTIVE? I am a newlywed and college student so sort of don't want to have to pay all the money to get surgery if it isn't even effective? So, have you had it? Is it effective? ALso, how is the recovery?

I sincerely appreciate every single answer and response I get. I am sort of desperate and have never felt so completely alone over something I can't control.


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Re: Questioning Surgery

Post  Alana3 on Wed Oct 31, 2012 2:02 pm

I just set a date to get it, and I am scared out of my mind, this girl melonhead (sn) said she got it and it wasn't terrible. I'm at a loss, but if you have only had this for 9 months, there are other options you should maybe try first. Have you tried anything before you come to surgery conclusion?

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Re: Questioning Surgery

Post  tandaschroeder on Wed Oct 31, 2012 3:36 pm

Alana3 wrote:I just set a date to get it, and I am scared out of my mind, this girl melonhead (sn) said she got it and it wasn't terrible. I'm at a loss, but if you have only had this for 9 months, there are other options you should maybe try first. Have you tried anything before you come to surgery conclusion?

I heard the surgery wasn't too bad. Don't be nervous. You will be GREAT! When are you getting the surgery? Will you let me know how it goes? It's been 9 months but that's seriously long enough for me. I've tried everything doctors suggest. And it's a pretty bad case. So nothing has seriously helped me. Let me know how the surgery goes!

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Re: Questioning Surgery

Post  BpCookie on Wed Oct 31, 2012 3:45 pm

Hello, I was considering it at one time but my Gyno started to tell me the side effects and that was it for me, I changed my mind. So you could say that I chickened out. What kind of surgery are you thinking about getting?

I just went through a Pudendal nerve RFA, which is burning the Pudendal nerve endings. Its supposed to take away the pain but its been over a month and I'm still in pain. I have a few good days but way too many bad days. My pain specialist said that if this doesn't work then they have other procedures they can try.

What ever you choose to do, I wish you the very best of luck!!!!! We all deserve to be pain free and rid of this damn thing.

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Re: Questioning Surgery

Post  tandaschroeder on Wed Oct 31, 2012 3:51 pm

BpCookie wrote:Hello, I was considering it at one time but my Gyno started to tell me the side effects and that was it for me, I changed my mind. So you could say that I chickened out. What kind of surgery are you thinking about getting?

I just went through a Pudendal nerve RFA, which is burning the Pudendal nerve endings. Its supposed to take away the pain but its been over a month and I'm still in pain. I have a few good days but way too many bad days. My pain specialist said that if this doesn't work then they have other procedures they can try.

What ever you choose to do, I wish you the very best of luck!!!!! We all deserve to be pain free and rid of this damn thing.


I couldn't agree with you more. We all really do deserve that. It's so embarrassing and more humiliating. The surgery is called a vestibulectomy.

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Re: Questioning Surgery

Post  Alana3 on Thu Nov 01, 2012 1:58 pm

Sorry, I forgot to respond.

BPcookie- The people who have had it have all been really positive, what kind of surgery were you talking about? The one we were talking about is called a vestibulectomy, where they cut away the vestibule skin and replace it with skin from up in your vagina. I talked to someone else about the nerve deal, but fortunately, that's not what I have (I hear that surgery does have really bad side effects). But what were you discussing?

tandaschroeder- I set a date for december 5th and I will definetely let you know how it goes (if I don't chicken out lol), I agree this is humiliating and I'm so scared to have a boyfriend because of it. No one understands what it's like to have an incurable disease that limits your sex life. And its embarassing to discuss, tho I have been better about that. Where are you from? And have you been tested for all infections- ureaplasma, strep, etc etc? I had all of them and still feel like crap (well supposedly, but at one of my doctors they def didn't sterilize properly and they had an "outbreak" of ureaplasma- which I questioned because I was like we're all not sleeping with the same guy how can there possibly be an outbreak in ONE office??) But yeah, the only reason I suggested to try minimal stuff is because it is ultimately better but if you can't handle it find someone who will at least consider the surgery. ugh medical nightmare!

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Re: Questioning Surgery

Post  tandaschroeder on Thu Nov 01, 2012 3:24 pm

BpCookie wrote:Hello, I was considering it at one time but my Gyno started to tell me the side effects and that was it for me, I changed my mind. So you could say that I chickened out. What kind of surgery are you thinking about getting?

I just went through a Pudendal nerve RFA, which is burning the Pudendal nerve endings. Its supposed to take away the pain but its been over a month and I'm still in pain. I have a few good days but way too many bad days. My pain specialist said that if this doesn't work then they have other procedures they can try.

What ever you choose to do, I wish you the very best of luck!!!!! We all deserve to be pain free and rid of this damn thing.


What are the side effects? Are you talking about a vestibulectomy?

Alana3: I live in Utah. This forum is seriously allowing me to take a step back. I have tried so many things. And I am unable to have sex. Buttt..I am super confused on which step to take. I am starting to think surgery is the only way. Think about it--every person I've read on here hasn't had success UNLESS they got the surgery.

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Re: Questioning Surgery

Post  BpCookie on Thu Nov 01, 2012 5:24 pm

Hello, NO, the surgery wasn't a Vestibulectomy. The surgery that I am talking about is where they cut out the nerves under the skin of the vulva. I believe a Vestibulectomy is when they remove the SKIN of the vulva. I am sure that any serious side effects are rare. Other wise the surgeons wouldn't even attempt the surgery. I am sure you will be just fine. Try not to worry. Very Happy
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Re: Questioning Surgery

Post  Alana3 on Thu Nov 01, 2012 6:15 pm

BP- Again, I feel like an idiot because you already told me that elsewhere, sorry to have you explain again! I read vestibuletomy has little side effects especially if you listen to doc. 93% of women who have had it done would do it again so hey that's good news! Maybe you can talk to someone else about the nerves???

tandaschroeder- Yeah, I agree everyone who has any relief has had surgery and the people who try stuff constantly do different things and it comes back- been there done that I'm done. I had this lidocaine stuff that burned like fricken hell. 2 weeks into my cycle is bad but than 2 days before my period its fine and as soon as my period starts hello vagina! I'm sick of not feeling good because of the burn, I'm sick of no sex and tampons hahaha yeah right. It's good to talk to someone over here too, most people here live in the UK. But I agree until people get the surgery they're usually in pain.
I've tried:
accupuncture (still do it to relax)
estrace
anitbiotics
diclucan
2 compounds
birth control (I have to be on it because of my periods ugh)
baking soda baths (help)
coconut oil (tastes like ass cant do it)
lube for sex (still hurts)
lidocaine which burns
vitamins: probiotic for women, yeast defense, and cranberry
massages
I AM SICK AND TIRED OF THIS!!!! Are you really thinking of surgery? Any good docs in Utah what do you think are you saying go for it?

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Re: Questioning Surgery

Post  tandaschroeder on Thu Nov 01, 2012 7:59 pm

@Alana: I can't tell you how much I sincerely appreciate you writing back to me! You have tried all of that..and none of it worked? I mean, some helped...but you are still getting the surgery. Therefore, I don't even want to bother trying the rest of the things I have yet to try. Does that make any sense? I smiled when you said that 93% of women who get the surgery say they would do it again. I want the surgery really bad but am freaking out because of 1. pain 2. recovery. 3. effectiveness! Also, there is a specialist that is amazing but he doesn't accept my insurance. I am in the process of getting a new company but it won't be for a couple of more months. THat being said, it's going to take that much longer until I can't even have sex with my husband. It's terrible. I hate it so bad. And the embarrassment and emotional part of it all make it that much worse.

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Re: Questioning Surgery

Post  Alana3 on Thu Nov 01, 2012 8:15 pm

You're welcome. Yes, I tried all of that if not more (I even had 2 back to back transvaginal ultrasounds yeah that was fun with a sore vagina you shove a donkey dick up there nice- sorry it still pisses me off!).

I'll have to find the article I read it was a huge experiment with placebos. I googled something like is a vesibuletcomy worth it? You can try and see what that brings up, I don't know where the article is. Hey at least you have a husband who in their right mind is going to want me? haha if I find it again I will forward it to you. My doc said people have an 85-95% cure rate. Those are HUGE odds that are in your favor!

Honestly, try them they MIGHT work for you, I got some relief for a bit. And life was good for a while (I was even have sex with physical therapy, but the guy I was with at the time was very aware of what we were doing, it still hurt, but it was ok). Have you tried pt?

And aren't you the one saying it won't be that bad Wink haha I think a few weeks of discomfort is worth sex again. Tho when I feel OK I'm like why fix it? ger! I warn you most of the vv specialists don't take insurance. Mine was $355 I had to pay, but luckily my insurance accepts out of network doctors. Phew! Let me know if you have any other questions!

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Re: Questioning Surgery

Post  tandaschroeder on Thu Nov 01, 2012 9:28 pm

Alana3 wrote:You're welcome. Yes, I tried all of that if not more (I even had 2 back to back transvaginal ultrasounds yeah that was fun with a sore vagina you shove a donkey dick up there nice- sorry it still pisses me off!).

I'll have to find the article I read it was a huge experiment with placebos. I googled something like is a vesibuletcomy worth it? You can try and see what that brings up, I don't know where the article is. Hey at least you have a husband who in their right mind is going to want me? haha if I find it again I will forward it to you. My doc said people have an 85-95% cure rate. Those are HUGE odds that are in your favor!

Honestly, try them they MIGHT work for you, I got some relief for a bit. And life was good for a while (I was even have sex with physical therapy, but the guy I was with at the time was very aware of what we were doing, it still hurt, but it was ok). Have you tried pt?

And aren't you the one saying it won't be that bad Wink haha I think a few weeks of discomfort is worth sex again. Tho when I feel OK I'm like why fix it? ger! I warn you most of the vv specialists don't take insurance. Mine was $355 I had to pay, but luckily my insurance accepts out of network doctors. Phew! Let me know if you have any other questions!

What is PT? You asked if I've tried it...I'm not sure if I've heard of it. It WILL be okay. I'm just still worried about the effectiveness. Especially because it's a LOT of money. Ya know? Let me know how your surgery goes! Good luck! I'm excited to hear how you are doing in about a month!!

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Re: Questioning Surgery

Post  Alana3 on Fri Nov 02, 2012 12:26 pm

Physical therapy it worked but my muscles were spasmping... And ugh don't remind me lol

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hey

Post  raffles32 on Sat Nov 03, 2012 11:14 pm

Hi

I am fromt he Uk and also thinking about surgery- though worried I won't be offered it- can anyone tell me what they had ? I understand not everyone is eleigible>

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Re: Questioning Surgery

Post  tandaschroeder on Mon Nov 05, 2012 5:57 pm

raffles32 wrote:Hi

I am fromt he Uk and also thinking about surgery- though worried I won't be offered it- can anyone tell me what they had ? I understand not everyone is eleigible>

Hey Raffles! I Have vulvodynia which prevents me from having unpainful sex...as well as the rest of these women. To be honest, if you KNOW you have it and still have to be "eligible" just come to the US! I told my doctor I wanted it and she said, "Ok!" As long as you have it and nothing is working for you, I would say go for it. Do you have any more questions?

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hi

Post  raffles32 on Mon Nov 05, 2012 6:04 pm

thanks for the reply- When I say eligible, over here its only really recommended if the VV is localised not general (i.e specific points and only on contact)

Have you had the surgery? How bad was it?

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Re: Questioning Surgery

Post  tandaschroeder on Mon Nov 05, 2012 6:36 pm

raffles32 wrote:thanks for the reply- When I say eligible, over here its only really recommended if the VV is localised not general (i.e specific points and only on contact)

Have you had the surgery? How bad was it?

Ahhh..I see. So are you not considered "eligible?" I've read a lot of ladies on here who have constant aching. And I only feel aching during contact. I haven't had the surgery but am considering it.

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eligible

Post  Alana3 on Tue Nov 13, 2012 8:11 pm

The deal over here with the "elligible" issue (and im saying over here as in the states!) is that it works better if it's localized provoked vv. If its generalized and all over it's not as easy to remove (to my way of understanding it my doc tried to explain it to me). Mine does not hurt all the time only with sex and tampons, so I would think mine being in a smaller location and not as easily pissed off would benefit better from surgery than someone with it being all over and in constant pain. And I feel really bad for you because when mine is pissed off forget anything else if my vagina is unhappy I am too :/

Again, I'm def not a doctor but that is how I understand it Smile

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Re: Questioning Surgery

Post  Aquarius on Fri Nov 16, 2012 12:25 am

tandaschroeder wrote: I want the surgery really bad but am freaking out because of 1. pain 2. recovery. 3. effectiveness!

I cannot yet tell you about effectiveness, but I had the surgery exactly one week ago, and getting a tooth filling is worse! Seriously! Do not be scared of the pain. It's nothing compared to what you have already endured!!
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Re: Questioning Surgery

Post  JamieT2006 on Fri Nov 16, 2012 6:36 am

I am hopefully doing this right. I haven't been on one of these forums in more than five years but I remember what it's like to need to hear a success story! I was in your exact situation - married as a virgin and within one week, sex was so excruciatingly painful that it was impossible. I felt on the verge of passing out w each attempt. Once i finally got a diagnosis, I became pretty down and discouraged. Over he next year I tried anti-convulsants, tricyclic antidepressants, lidocaine, estrogen based compounds, biofeedback and pelvic floor therapy. Not even a minor improvement.

At that time, I began the battle tO have a full vestibulectomy and finally gOt insurance to cover it. I lived in Florida and had my mind made up to get it done at university of michigan. No easy feat but it happened. I do want to say that I had provoked, localized VVS so I was the ideal candidate for the surgery; I know not everyone has that type.

After surgery, I stayed home for a week or two after just resting. The Pain wasn't bad; I
just needed to be careful sitting and things like that. Eight weeks after surgery, I used dilators of progressing size, practicing the relaxation and muscle control I learned before.

Now, I am able to have painfree sex whenever I want with my husband. I do have to use lube and I do have him enter me slowly but those are the only "side effects" I have experienced. It has been six years.

I will say it's important to research your surgeon if you feel led to have surgery. I fought for one of the best and got her, for which I'm so thankful. Doctors can't tell I've had surgery during exams unless I tell them.

I wish you all the best; don't lose hope. I have spoken w women who have experienced healing - with and without the surgery. Be your own advocate and do your research. Be encouraged.

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Re: Questioning Surgery

Post  Alana3 on Sat Nov 17, 2012 1:58 am

I think I'm challenging out. Im scared to death that it will provoke pain which I don't have now. And im active and am scared of the healing process. I really only have problems with sex and its not all the time. I don't know what to do

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Re: Questioning Surgery

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