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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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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 1

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 9

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: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

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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.


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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



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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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