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» Will there be an end?
Today at 12:06 am by Krista2828

» you can be healed so easy and quite fast.
Yesterday at 11:46 pm by pussycat

» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 0

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 0

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

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

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: 4

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

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

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 …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

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: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

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 …

Comments: 0


How to deal at work

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How to deal at work

Post  fran on Sat Oct 29, 2016 12:21 am

Hi everyone,

I am a 29-year old from the UK and have recently been diagnosed with Vulvodynia. I have just spent hours reading through the forum and feel reassured that I am doing the right things to address it. My symptoms have become so bad that I had to get signed off work and I have been at home for nearly 2 weeks now. At the moment, I just can't imagine sitting at a desk all day and being in a stressful environment as this makes the pain a lot worse.

I was wondering how everyone is dealing with their work and working environment? Has anyone got any tips on how to reduce the pain in an office setting (is there a seating position that makes it easier? Do you go without underwear/tight clothes?) and has anyone taken any more drastic measures such as requesting longer breaks etc? Has anyone tried mindfulness/meditation to control the pain at work?

Looking forward to hearing your advise. Thanks

fran

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Re: How to deal at work

Post  PainBlogger on Sat Oct 29, 2016 8:03 am

Have you tried a pressure relief cushion? https://putnams.co.uk/collections/pressure-relief/products/sero-pressure-cushion-dr-huff-cut-out is the one I have for hard chairs.

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Re: How to deal at work

Post  fairlight10 on Sat Oct 29, 2016 10:33 am

I use a cushion with a centre cut out when I drive. I was off work for 4 months until I felt I was able to go back to work. Nortriptyline 20mgs was what got me back on my feet. That was in 2012. It is improving all the time. Still have set backs. Summertime is challenging for me. If I get too hot due to high temperatures it sets it off. So I cope better when its cooler. I can sit comfortably now. Try not to put too much pressure on the vulva. Sit back further and try to relax. It's very early days for you. I hope it gets better for you soon. I also recommend Dr Huff cushion to sit on. This didn't help for driving. My husband bought me a dunlop ring cushion which is more of a heavy duty foam. This seems to help more as when I drive I am sitting more upright and putting more pressure on the vulva. Good luck

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Re: How to deal at work

Post  fairlight10 on Sat Oct 29, 2016 10:45 am

My husband has just reminded me I also had 20 sessions of acupuncture during the first 12 months. This was beneficial for the stress this condition can cause. I was also counselled when having the acupuncture.

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Re: How to deal at work

Post  fran on Sat Oct 29, 2016 11:53 am

Thanks for the advice. I already have a ring cushion but it doesn't really help so I might try and find a gel cushion instead. I'm just finding the idea of taking a ring cushion into the office a bit strange because people know what it is and what it's for....but maybe I just need to get over the embarrassment. I am getting signed off for another month now which is very frustrating (and a drain on money as I am seeing a lot of private doctors and specialists because my NHS referrals have got 2-3 months waiting times which I'm assuming is something most people here are familiar with.)

I am starting CBT/mindfulness on Monday and I have a physio examination for my pelvic floor booked in as well. Both self-funded. I'm really keen to try acupuncture - do you think the practitioner needs to have any knowledge about vulval pain? Did you see a specialist? I'm just worried that someone could make it worse?

I have been given Amitryptaline and I have the pills at home but so worried about the side effects that I haven't touched them yet.

Do you know of any good doctors in the UK? I am with a good Gyaenecologist and have been in contact with David Goldmeier who knows a lot about this. Also waiting for another referral to a dermatologist who specialises in Vulvodynia.
Have you seen a pain specialist? This was recommended by Dr Goldmeier.

Sorry about all of these questions but I want to take control of this as soon as possible. Thanks Smile


fran

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Re: How to deal at work

Post  fairlight10 on Sat Oct 29, 2016 2:53 pm

Get started on the amitriptyline in low doses while you are off work. If you find the side effects unpleasant ask to try nortriptlyline these are tricylic antidepressant used in low doses they very gradually calm nerve pain. Mine is in my vestibule. It works by desensitising the area giving you the problem. So, when it gets provoked I.e. sitting, wearing underwear and so on you will be more comfortable. This is also when your cushions will help. You will then be able to let go of thinking about it most of the time. My acupuncturist is a GP in the Maidstone area. I had to go by the private route eventually as a lot of doctors don't know what is wrong. They tell you it is thrush or a uti. They give you medication for that and it makes it worse. My gynaecologist told me I had vulvodynia and started me on the antidepressants. I saw him again on the nhs as a referral from my gp for the removal of a lost mirena coil, a vulvoscopy and a histoscopy. I have not been embarrassed to talk to family and colleagues about this condition. They were supportive when I was at my worst and when I thought this would never get better.

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Re: How to deal at work

Post  PainBlogger on Sun Oct 30, 2016 10:50 pm

fran wrote:Thanks for the advice. I already have a ring cushion but it doesn't really help so I might try and find a gel cushion instead. I'm just finding the idea of taking a ring cushion into the office a bit strange because people know what it is and what it's for....but maybe I just need to get over the embarrassment. I am getting signed off for another month now which is very frustrating (and a drain on money as I am seeing a lot of private doctors and specialists because my NHS referrals have got 2-3 months waiting times which I'm assuming is something most people here are familiar with.)

I am starting CBT/mindfulness on Monday and I have a physio examination for my pelvic floor booked in as well. Both self-funded. I'm really keen to try acupuncture - do you think the practitioner needs to have any knowledge about vulval pain? Did you see a specialist? I'm just worried that someone could make it worse?

I have been given Amitryptaline and I have the pills at home but so worried about the side effects that I haven't touched them yet.

Do you know of any good doctors in the UK? I am with a good Gyaenecologist and have been in contact with David Goldmeier who knows a lot about this. Also waiting for another referral to a dermatologist who specialises in Vulvodynia.
Have you seen a pain specialist? This was recommended by Dr Goldmeier.

Sorry about all of these questions but I want to take control of this as soon as possible. Thanks Smile


I think you're doing the right thing by self-funding treatment to avoid the long NHS wait. I've been doing the same. I'd rather go without other things and put my health first because it's difficult to enjoy life when in pain, isn't it? I've been lucky enough to finally find a combination of therapies that have worked for me (Duloxetine, physio, home physio exercises, acupuncture, common sense measures). You can read my background here: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

If you can find an acupuncturist who specialises in pain then all the better, but any qualified practitioner should be able to treat you.

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Re: How to deal at work

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