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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 …

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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: 2

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

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: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7


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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