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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 …

Comments: 7

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 …

Comments: 2

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 …

Comments: 1

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


Another Newbie

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Another Newbie

Post  saskatownv on Tue Feb 08, 2011 1:40 am

My name is Sally,

I was diagnosed with Vulvodynia 3 years ago and have been in treatment with one of the leading specialists in the field ever since although I have had the condition for around 5-6-7-8 years maybe more. It all started with yeast infections...

I got so many of them, i used thousands of different creams, garlic up there, yogurt, and tea tree oil even. Im pretty sure thats what lead to the vulvodynia. I got rid of the yeast problem with a strict diet of no wheat, yeast, sugars of any kind including fruit, alcohol and dairy. And was left with a sore, burning vulvar area all the time, but mostly during sex and after sex it would burn for like day or two. There have been flare ups too, but maybe 5 over the course of 5 years where i had to lie on the couch naked with my feet up in the air for a few days.....ugggg.

Anyhow. I did the usual, doctor to doctor before i found the guy I am going to now. Im not going to say his name but he has been wonderful although he is very frustrated at my lack of healing. He has cured all of this patients within 4 months - Im going on 3 years.

3 years of different kinds of estrogen creams pill and suppositories, pain blockers, and dilators.

I am married - almost 3 years and its really taking a toll on my relationship. In fact I was starting to believe that I hated sex when I used to love it! Like really love it! The thing is is that I actually can have sex, its just painful at first, but if Im really excited, and with loads of lubrication - then the pleasure overrides the pain, which is good but.........who gets soooooooo turned on every time they have sex? And then it hurts for a few days after.

So, the last 2 years I have had a really grin and bear it attitude. My husband is so nice and suporitive, never asks for sex and has taken to sleeping on the couch because he doesnt want to upset me by coming to bed with me. But, I still put on my game face, and even though I would rather clean a toilet I get all ready with a big container of lube and grin and bear it for the 4 minutes until its over until the next month.

I am actually thinking of telling him that he should maybe cut his losses and find someone who actually works and its so defective. I mean, its not like I get turned on anyway. Anyhow. I just met you all, and this is a lot of info to put out there to the world, theres more.......but i feel like this is a first date, so till next time.

Bye for now.

Sally


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Re: Another Newbie

Post  Sarah001 on Tue Feb 08, 2011 2:03 pm

Hi Sally and welcome to the forum. I think we all have felt that way about the sex side of things with this awful condition, my partner of 13 years dumped me because it was one health condition he couldn't handle (I have others that restrict me in other ways) and naturally replaced me with a younger blonder "in full working order" model but the overriding sense of relief at not having to think about the sex side of things for now has outweighed the heartache. I do think you and your other half should share a bed though, just my opinion but it would help the two of you feel close to each other rather than feeling very separate and you could do other things rather than penetrative sex to maintain that closeness for now. Not all men want to find someone else and prefer to stay around while you find something that helps.

As for the specialist, have you tried pelvic floor retraining? I don't think it was on your list of tried treatments or I may be mistaken. Perhaps if this specialist hasn't helped you in 3 years it might be time to try someone else? Which drugs did you try? Are there others that other women have had success with that might be worth a go? It's one of those conditions where it can take alot of time to find the right regime, my vulvar specialist told me on our first appointment it's a case of finding something that works for the individual and can take several months of each treatment before you know if it's going to help or not so to be patient with each thing we tried.

Do you have any other health conditions? Some of the ladies on here, myself included, have some other health prblems that are quite commonly found with vulvodynia. Do you have any tight muscles around your pelvis? Trigger points and tightness in your back? A strong core? During the time I've been researching vulvodynia there does seem to be alot of women with musculoskeletal issues that have it.

Anyway, have a good look round at all the posts, we discuss everything and anything on here and support each other in our quest to find a solution.
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Re: Another Newbie

Post  Sebby (Admin) on Tue Feb 08, 2011 7:43 pm


Hi Sally and welcome to the forum!

I was in a relationship when the Vulvodynia first reared its ugly head (we broke up for other reasons..not the Vulvodynia..other reasons being he was a selfish asshole! lol) I could sometimes atempt penetration and once relaxed into it (hurts at first, always has) then I was sorta ok but was sore after for days like you said.

On days where I could atempt penetration we did other things like oral, touching...

I to feel it would be a good idea to sleep in the same bed as it will help to maintain closeness and you certainly dont have to attempt anything sexual every night! I wouldnt have the energy even if I didnt have the Vulvodynia!

I also think it maybe a good idea to look into other treatments if you have not noticed a great improvement. You can still continue some of the old stuff like the dilators, creams etc but maybe another pain pill? Im trying Pregabalin at the moment, which is an anticonvulsant but is used also to calm nerves that send pain signals. Only been 6 days so will have to wait and see if it helps.

Also I deff recommend some pelvic floor training like Sarah said..a good book is 'Ending Female Pain' by Isa Herrera..

Im also trying the dilators..will get back to it once im off my period..again its early days with this. Do you find the dilators have helped stretch you? Im only on the first thinest one and am still so scared of the next one up as it looks too wide!

Anyway Good luck and Take Care


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Re: Another Newbie

Post  saskatownv on Tue Feb 08, 2011 8:42 pm

Thanks for your support guys. I guess whats been on my mind as of late is.......am I not into sex full stop? Or, just sex with my husband? I feel like this condition is playing tricks with my mind? Am I normal and did I just fall out of love? I dont even feel the slightest desire to try any other form of intimacy because frankly, i don't care. Or, is it the consequences of what it would lead to that makes me disinterested?

What a mind &^uck! Is it me, or the vulvodynia? Should i tell him to cut his losses and go find someone who will love him and all that he has to offer and then go through a string of men until the sex gets to the stage where it gets routine and therefore the pain doesnt over ride the pleasure? Then I will know its time to move on? Hmmmm. Sounds fun for a while however.... Evil or Very Mad

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Re: Another Newbie

Post  Mouse on Tue Feb 08, 2011 9:31 pm

Ok my lovely STOP HAVING PAINFUL SEX!!!

Your husband sounds lovely, don't throw the baby out with the bath water. Hmmm now I'm wondering why I've turned into my Nana.

I think it's extremely difficult to think about sex fondly when it involves pain. So give that up and find a therapist who can help you and your husband establish some non threatening intimacy. Sex isn't all about penetration, that's how men get off not women. I've been reading!

Do you have therapist Sally? If not maybe a sex therapist would be helpful. I have one, I tell people she's my pain therapist though. It's a whole new world.

xx.


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Re: Another Newbie

Post  gem123 on Tue Feb 08, 2011 9:50 pm

hey
i too have the thoughts you are having over your partner, i often tell my fella to go and find someone new but he never did so have stopped saying it now lol this illness is awful but there is always support here for you even if its just for a rant!!are u on facebook
as there is a private group on there if ur interested take it easy hun xxxx

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Re: Another Newbie

Post  saskatownv on Wed Feb 09, 2011 1:33 am

yes, I have a therapist, she very awesome!

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Re: Another Newbie

Post  Sebby (Admin) on Mon Feb 14, 2011 10:25 pm


Well from my experience when you find anything painful your brains reaction to it (in order to protect you) is to do what it can to prevent you from engaging in that thing that is painful..so low sex drive would be the outcome. Our bodies and minds are wired to do things which bring us rewards and to not do things that bring us pain either physical or emotional.

Like when you fall over in your 4 inch heels and now matter how sexy they feel your too scared to put them on again! Eventually you stop thinking about those heels...

But sometimes (as in the case of my anxeity in general) we have to do things in order to re-educate our brain..a kind of feel the fear and take a step anyway..

Like for instance putting on some 2inch heels or trying to bring the kissing and cuddling back into the relationship again..baby steps as they say but at least its moving forward..

Dunno where I got the whole heel thing from lol




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Re: Another Newbie

Post  jules on Tue Feb 15, 2011 1:25 am

Sally, your feelings are very normal. Why would you be interested in sex if it isn't pleasant and you hurt for two days afterward? Pain is unpleasant and your brain is helping protect you from it. Now..it doesn't have to stay that way. I would agree w/ all...get that husband back in bed w/ you and at least hug, kiss, snuggle or do all of the above. I have been married for over 21 years. I have told my husband to find someone else cause i can't have sex anymore. Of course when i say it deep down i don't mean it. but, i sometimes feel like half a woman or less cause i can't put out often. my husband loves me for me, not for the sex..but for who i am as a person. i'm guessing your husband feels the same way. as for having no interest in sex, that comes along w/ marriage and having children. so much of the focus goes on the children, we can easily lose focus of the marriage, become less attracted to our partners or not feel sexy or sexual. IT'S ALL NORMAL. I know you have a therapist...i recommend being open and honest w/ your husband and maybe including him in some of your therapy sessions to discuss how you can renew the spark.

as for the pain...i also agree w/ others. try some different things...physical therapy, diff meds etc. good luck.

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Re: Another Newbie

Post  saskatownv on Tue Feb 15, 2011 4:06 am

Well thanks guys. We are going to see my therapist together and see what happens. I really appreciate hearing other peoples stories though. It makes me feel less like a freak I guess. Ill let you all know how the therapy goes.

xo

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Elavil

Post  saskatownv on Sun Mar 20, 2011 5:32 pm

Hi all. Sally here. So, I am sitting on a chair without my rubber invalid ring and I have no pain unless provoked. I am feeling very out of it from the amitriptyline that I was prescribed. I am up to 50mg a day taken at bedtime. I go bright red in the face if i drink (lol) and fall asleep instantly which is great! And the best part!!! I wore jeans yesterday! It didnt last all day but at least I got to wear them! The drugs make me really out of it but only for a week when I am increasing the dosage (I upped the dosage by 25mg 3 days ago). Then my body gets used to it I guess.

I also have a new estrogen cream that is mixed with DHEA which I have never used before. I dont know if its working yet. Will keep you all informed.

As far as the husband front is concerned. I still have no attraction to him at all. It stresses me out and makes me very sad but I am thinking that it just might be the end. He is a wonderful guy who should have a wife who loves him and craves his attention and wants to enjoy a lovely normal sex life that I cant, or dont want to engage in.

Sally


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Re: Another Newbie

Post  Sebby (Admin) on Tue Mar 22, 2011 8:11 pm


Hi Sally

Im so pleased you got to wear jeans! It does seem like the meds are having an effect! Hopefully the side effects will where off once you get used to the current dose.

With regards to your husband, its early days yet and it could be that it will take more time to regain feeling sexual again. Dont give up on your marriage just yet but you will know when you finally come to a decision about that.

I would suggest counselling for yourself to really think this all through.

Take Care

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Re: Another Newbie

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