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» Had this for 5 years, looking for people who understand
Sun Nov 18, 2018 11:22 pm by srbry

» IMPORTANT FOR UK SUFFERERS
Sun Nov 18, 2018 8:42 pm by srbry

» Found relief after more than 15 years of pain!
Thu Oct 25, 2018 4:29 pm by AlwaysInPain

» Back pain, burning feet and vulvodynia....all related?
Sat Oct 20, 2018 3:50 am by lindsey_taylor

» Anyone have pain with urination?
Thu Oct 18, 2018 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


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

fairlight10

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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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