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» Vulvodynia is a secret
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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



Comments: 6

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

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 …

Comments: 11

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 …

Comments: 2

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 …

Comments: 11

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 …

Comments: 1


3 years down the line..

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3 years down the line..

Post  Newbie2012 on Tue Nov 27, 2012 11:16 am

Hey everyone,

Ive been dealing with this condition for around 3 years and i am now 20 years old. My biggest problem with the pain is inserting tampons, sex etc, i have had no relief over the years dispite trying the different medications and being passed from pillar to post through all the different doctors/gynaecologists.

I have been looking at this forum everyday for around 6 months or so and have just had the courage to join, it's such an isolating condition and im at a stage now where im really depressed and can't enjoy my life. I have recently started seeing a guy that i really like, but feel i am stringing him along, our 3rd date is next week and the subject of sleeping together is bound to come up soon. I feel like this is the worst thing anyone could go through at this age & the guy is a year younger than me which doesnt help - what 19 year old guy is gonna stick around knowing i can have sex? pale

I have another appointment with the doc on monday to see what the next course of action is, i am also seeing a physiotherapist but this isnt helping and my appointments are almost 3 months apart (i get the impression she isnt interested either).

Feel like a weight has been lifted off my shoulders almost after writing this post, maybe talking to you girls about this condition will help after all.

Thanks for reading x

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Re: 3 years down the line..

Post  Newbie2012 on Tue Nov 27, 2012 11:49 am

Another thing i meant to add..

I havent found the root of my problem with v yet.

I always have extra discharge down there and notice before i have a shower/bath that there is white bits on my vulva, which i thought was a yeast infection although was treated for this and it did not help. When i first started having problems i had a boyfriend, sex was ok at first and as the year went on it slowly got worse to the point where it is now impossible. When we met i went on the depo provera jag, i have no idea if this is the cause of all my problems, or if the fact i started having alot of sex has somehow damaged me down there (i had only had sex twice prior to that relationship).

I have so many questions about this condition my head could explode Sad

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Re: 3 years down the line..

Post  Alana3 on Tue Nov 27, 2012 1:00 pm

First and foremost if that's all a guy wants he's not worth your time. However I do understand where you're coming from it was pretty much the same for me. Have you tried anything for the v? I don't know if you'll ever find out exactly why it was caused but it doesn't matter all that matters is getting well. Where are you from what kind of treatments have you tried? Remember you're not aloneays thought I was but joining a support group is the greatest thing you could do o unless you have this issue no one knows how hard it really is and that's it not just sex and pain but emotions too Sad

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Re: 3 years down the line..

Post  Newbie2012 on Tue Nov 27, 2012 1:13 pm

Thankyou for the reply. Im from Scotland and have tried amitriptyline & gapapentin but couldnt cope with the side effects, not to mention they werent helping in the slightest anyway. At my doc app on Monday im going to mention the lidocaine gel also. I bought some dilators recently aswell but i want to speak to my physio first before i attempt to use them.

Have you had any success at treatment?

Thinking about telling the guy i am seeing i am just not interested, cant cope with the embarrasment of having to tell him about this problem Embarassed ..although the thought of being like this when it comes to relationships for the rest of my life is depressing!! Sad




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Re: 3 years down the line..

Post  Alana3 on Tue Nov 27, 2012 2:32 pm

I'm headed for surgery next week I'm done with the mindless medications that don't work. My doctor put me on the meds you've tried but as a compound that I topically applied, maybe that will work for you?? I have tried physical therapy it helps with muscle but the skin OMG still hurts so bad Sad

As for the boys trust me I get it, I hate even dating it makes me uncomfortable because I don't know how they'll react to my hooha. It's such an annoying issue ugh

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Re: 3 years down the line..

Post  Newbie2012 on Tue Nov 27, 2012 5:58 pm

Surgery is something I've been thinking about for a while. What kind of surgery is it you are having? I've read about a few different types. Fingers crossed for you that it cures if not reduces your pain! Are you in the UK aswell?

With the cream did you get this from the gyno or was it a dermatologist? Definitely something I will mention at my next appointment.

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Re: 3 years down the line..

Post  Alana3 on Tue Nov 27, 2012 6:36 pm

Actually, I'm in Florida, so a ways off from you. Where in the UK are you located??

I'm getting a partial vestibulectomy- if I don't chicken out- I have my pre-op tomorrow. I can let you know how it goes if you'd like. I got my topical from my gyno he belives that I shouldn't have to have really bad side effects if it can be applied elsewhere, which I really liked. Unfortunately, today I have a lot of pain, (mine is usually provoked but when it gets close to my period it's pretty bad) but I guess it's good for my appointment tomorrow. I don't want him to leave anything off get it all. This is so debilitating (now the pain feels like its all over although I know it's only in one spot ugh!). What kind of surgery were you looking for?


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Re: 3 years down the line..

Post  Newbie2012 on Wed Nov 28, 2012 11:20 am

Im not actually that clued-up about all the surgery for v, although ive read a few things on the net. Probably something i should have a talk to my gyno about however ive also heard they are reluctant to perform surgery for this condition, only do it as an absolute last resort.

Thats not good to hear you were having a bad day with pain yday Sad those kind of days are the ones that make you feel really down & out more than usual. Good luck with the pre-op & please let me know how it goes!




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Re: 3 years down the line..

Post  Alana3 on Wed Nov 28, 2012 7:54 pm

So my preop... I'm not going to lie it hurt really bad they did the mapping, basically I told them where it hurt he drew on it and he took pictures of it to bring it in the OR with him. But omg it hurt. (I keep telling myself only a little more pain for a little while longer).

I told the doctor that I was scared to death. He said it was normal, and that he personally had only success stories and that I'd be 90-95% better if not all the way. He showed me EXACTLY(my pain was spread over a way bigger area than I originally thought) what he was taking off and explained the procedure. Until I actually talked to him about it I was crazy scared. He told me he used tiny sutures so that it wasn't as uncomfortable and that I could go back and do everything I'm doing now (which includes horseback riding and zumba) in 6-8 weeks. He also said that the pain wouldn't be as bad as I thought and that I'd probably be wanting to get out of the house within 5 days or so. I feel a lot more confident then I did even yesterday.

I just feel that this is the best way to go at this point, nothing else has helped, and I can't stand being in pain anymore than I have to. Also, the nurses and such in the hospital said I had a really good surgeon and good odds, so I feel OK. My doc tried a lot, but unfortunately, after I got to him, I was just fed up with failed treatments (its been about 6 years of pain, and 4 years of knowing something was really wrong, and countless doctors) so I told him I'd try one more thing, and it failed, and even made it burn. He was just like it's not worth being in pain and that's when he recommended surgery.

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hello people

Post  Dra.Cherrym on Fri Dec 07, 2012 7:54 am

I am from Nicaragua, i have been suffering from this for almost a year now, it started just a few weeks after i got married, it's better now but i am really afraid that this might come back, i'm trying to do everything i can to help, i want to try neogyn but i can't get it here, have any of you tried it? when i read what you have posted makes me more afraid because i have read so much that i do not now what to do or eat anymore, some people say oxalates, others say not to eat anything too acid. I need someone to talk to, to share this with, what experience have you had with the diet? i am relieve that i found this group, at least i know that i am not alone, and i pray everyday and ask God for help. F

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Re: 3 years down the line..

Post  Karen818 on Mon Jan 07, 2013 1:29 am

Try neogyn ladies! It has helped me sooo much words cannot explain how miraculous that cream is. I have suffered vestibular vulvodynia for years and only after 4 weeks of using neogyn i feel better! I am pain free 99% of the time, and sex is 99% percent pain free as well! This is a revolutionary discovery for women like us and I recommend all of you to give it a try, it won't hurt to try! My vagina is finally not on fire, but feels hydrated, cool and comfortable, I am so thankful to the creators of neogyn! So try that out see if it works, and sleep with no underwear at nights to less your vagina breathe and get some air... Good luck!

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Re: 3 years down the line..

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