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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

Comments: 0

anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2


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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