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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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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 …

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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 …

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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 …

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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 …

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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). …

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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 …

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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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