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

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

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

» Looking for a friend..... and new problems
Yesterday at 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 …

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

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: 5

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


Emotional mess...

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Emotional mess...

Post  KLynn on Thu Jun 14, 2012 10:26 pm

I've been an emotional mess since finding out I have vaginismus and vulvodynia. I've struggled my entire life with weight, which was hard to begin with, but then found out at 17 that I had ovarian cysts, then I developed hair in places most women don't grow hair, I suffer from bartholin cysts as well, and about a month ago was diagnose with vulvodynia and vaginismus. I know these things are manageable but having one after the other has made me an emotional wreck. I have a FANTASTIC boyfriend who is so supportive, but all of these things make me feel like a failure as a woman. Any advice on how to handle these things would be GREATLY appreciated.

For the vulvodynia I manage it by washing with cool water and no soap as well as wearing cotton underwear, but any other tips would be helpful. Its mostly manageable, but sometimes it can be quite painful.

Thank you for any advice you can give me.

KLynn

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Re: Emotional mess...

Post  ButterflyLiz on Mon Jun 18, 2012 10:07 pm

Hi KLynn,

Not really sure what to say but just wanted to reply to you and say you’re not alone. It’s so hard to deal with all this when you’re young, especially as there’s so little info and support out there. It opened my eyes to see how many people actually suffer with this.. on here, in person at a VPS event and in recent research (around 25% of women will suffer at some point). I wish people talked about it more then we might not have all these emotional issues to deal with on top of the actual pain itself.

You’re totally not a failure, anyone who can put up with this stuff has to be a pretty strong person. Don’t forget there’s always therapy, if you think that might be of help. Over the years I’ve basically had to give up being embarrassed / feeling guilty about the condition cos I need all of my energy to focus on getting better.

Have the docs suggested any further treatment for the vulvodynia? The usual route is amitryptiline or gabapentin / pregabalin. You can also get numbing gels / creams which help some people (lidocaine – if you’re in the UK you can buy vagisil over the counter). Also, it’s not glamorous but ice packs – I use frozen peas in a freezer bag down there (you’re meant to wrap it in a towel or something first). Go carefully to start with until you’re sure helps rather than hinders! We’re all different.

Liz x
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Re: Emotional mess...

Post  bluekangeroo on Tue Jun 19, 2012 10:11 am

Hey KLynn,

Don't worry - we all totally understand what you are going through on here. You are not alone and you are not a failure as a woman.

I often feel awful about my poor patient hubby - he has v high libido and mine has totally packed its bags and gone since this thing started. We've not made love in ages. But there are other things you can do to be close.

I feel like a crap mother quite often too, I have a 6 and 3 year old and often just can't do all the things for them that I want to, kick a ball around with them, play games outside, ride bikes... I feel so utterly pathetic when they ask me to do something for them and I just don't want to move.

It's a horrible horrible condition and so misunderstood. but I am really hopeful there is an answer out there somewhere... we just need to be tenacious and find it!

Find yourself a really good specialist who knows about vulva pain and get a treatment plan put together so that you feel empowered that you are doing something about it and you are not going to take this lying down (ok you might actually want to do a lot of lying down as that might ease the pain, but you know...metaphorically speaking!)

Take care

A

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Re: Emotional mess...

Post  riv on Fri Jun 22, 2012 10:40 pm

Hey Klynn

You really have had a run of it haven't you. No wonder you are feeling crap. I know how you feel and Im sure a lot of the other women here do. I got diagnosed with endometriosis and a chocolate cyst at the same time as I was told I had vulvodynia and eczema in my vulva (just to add insult to injury). I realise now it has been going on for years (around 20) and now I am tackling one thing at a time and each time I take control of one aspect I feel more in charge to take control of the next one.

I have had the support of a very good gynaecologist for my womb which has taken me a year to get under control. I think this was probably the starting point for feeling like I could then tackle everything else - but slowly.

Now I am working on tackling my beard with fortnightly trips to the beautician for electrolysis. Next I will be using IPL to get rid of my moustache both of which I have had for 8 years and have had the power to reduce me to tears in shops with harsh over head lighting and big shiny mirrors that suddenly alert me to the goatee I thought I had tweezered away. The rest of my body hair (which is unruly, wiry and mannish to say the least from the endo and cyst) is being dealt with a bit at a time as I can afford to treat it. I quite like dragging it out this way as its also drags out the sense of satisfaction I get each time I beat another patch of hair! I do have a friend with PCOS who saved up and had virtually her whole body lasered as she was so sick of her cyst induced hair - it was pricey but she is very pleased she did it as it seems to have worked really well for her. we are both in our late 30's so it was something we had both dealt with for a long time and decided that we had finally had enough! I would say its even worth saving up for over a couple of years - I prefer spending money on my hair removal than going on a holiday this year and next if necessary


Now I am getting this sorted I am now looking at my V and trying one treatment at a time - firstly with physio - which you might want to investigate especially for your vaginismus - not sure how it would if your B Cysts are causing you problems when you go for a session - you might want to wait until those are in a good situation before trying physio

I also had Cognitive Behavoural Therapy for depression about 7 years ago which I would highly recommend - its nice to talk to someone neutral and the therapist will tell you that you have every right to feel shoddy as you have had a load of horrible things happen. They then help you to find coping mechanisms for when things go wrong so its not so overwhelming (because getting bad news - especially a run of it - is VERY overwhelming and tiring). If you are not in the UK and have to pay for treatment look for a vulvodynia pain support group - there may well be one near you - and that can be really helpful to meet other people with the condition and have a good moan

I would say that you might want to start with reducing your pain - I found that once my pain had been reduced from the endo I felt physically more capable and in turn emotionally stronger. being in pain is so tiring - it exhausts you and should not be underrestimated in how run down you can end up feeling when hurting all the time. so as the others have said get referred - a gynae for your cysts and seeing what can be done to manage those and make sure your hormones are dealt with, and a dermatologist or gynae who runs a speciaist vulva clinic. And dont be afraid to change speciaist - if you dont like your doctor ask to be referred somewhere else (there are some fantastic doctors out there but there are also a few naff ones). Dont just rely on a GP to help - they can be great as a first point of call but you need someone who really knows their stuff. Read some of the literature out there too - I am reading The Vulvodynia Survival Guide which so far is proving very informative

No one fails at being a woman. Being a woman is troublesome as we seem to have bodies that can go wrong in so many ways. We have wombs that are temperamental and our hormones make us carry excess weight and cry at innapropriate times. I do not know a single woman who does not have a female orientated medical condition (endo, PCOS, fertility issues, vulvodynia) you just find that these things aren't discussed openly. That's why these forums are so great

I really wish you luck on starting to find some answers and treatments that work

Riv x

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Re: Emotional mess...

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