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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 …

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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 …

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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


I am so glad I have found this site :)

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I am so glad I have found this site :)

Post  miss.panda on Sun Oct 04, 2015 8:14 pm

Hi everyone,

I'm 25 years old and I have suffered from vulvodynia for as long as I can remember. I spent most of my teen years being told I had some sort of eczema/skin problems down there - I tried all the creams out there which would never work and doctors would never believe me that I hadn't tried to use them as I still felt pain down there after. I felt really embarrased and hurt by this so I stopped seeking help for a while. Eventually I decided to go back to my doctor where I was sent to a different hospital and I was evetually diagnosed with vulvadynia a few years ago. Everything fell into place and made sense which was such a relief - but I have unsuccessfully had any improvements since then. I've tried various meds including amitriptiline and gabepentin which didn't work - however I sometimes wonder if I didn't use them for long enough which is why they never worked. I'm currently seeing a psychologist/counsellor who has told me the pain will never go away and that I need to learn to live with it - do you ladies on here agree with that? Should I give up on trying to find something that will work? Or should I keep trying to find new things? Vulvadynia effects my life greatly - I've only ever had one boyfriend and sex was usually painful and since then I have totally avoided relationships despite really wanting a boyfriend as I just can't deal with the sex side to it.

Any advice would be much appreciated and I am so glad I have found this site where there are lots of others who also share my pain - I look forward to talking to you Smile

Thanks
x

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Re: I am so glad I have found this site :)

Post  Guest on Sun Oct 04, 2015 10:27 pm

Hello lils.panda:) I really don't want to believe your doctor, I think we will all get better if we believe. So I think you should keep trying. By the way, how long did you use Gabapentin?

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Re: I am so glad I have found this site :)

Post  sailor_moon on Mon Oct 05, 2015 10:38 am

Hi there,

That's terrible being told you will be stuck with this forever and to deal with it. Sad
I have been told that many times too...but I refuse to believe it, and my current doctor doesn't think I will be stuck with this forever, it's just trying to find a solution that's hard.

Have you had your hormones and PH checked over a 4 week cycle? Have you had a biopsy done? And regular swab tests? Have you been food and chemical allergy tested? Do you have any other health issues?

Sounds like you need to find a new doctor and different form of psychological support. All the ladies on here are very lovely and helpful Smile



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Re: I am so glad I have found this site :)

Post  miss.panda on Mon Oct 05, 2015 1:51 pm

Thanks for your replies door12 and sailor_moon Smile

I'm so glad you have both said that I shouldn't just accept my problem and not keep trying. Reading other posts on here has given me hope that there are other things I can try.

Door12: tbh I can't remember how long I used gabapentin for.....maybe for a few months? Is this something that you have tried that has been successful?

Sailor_moon: I've never had my hormones and PH checked - could this be something that effects it? I used to suffer from vulvodynia before I started periods so that could rule that possibility out? I have had a biopsy done and it didn't come back showing anything. I think I've had swab tests in the past but not regularly or recently. I have been allergy tested and it showed nothing. I suffer from various mental health issues (depression and an eating disorder) and I also suffer from IBS and eczema. Whats your story - what stage are you currently at?

Thanks both Smile
x


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Re: I am so glad I have found this site :)

Post  Guest on Mon Oct 05, 2015 2:37 pm

Oh hi again:) No the reason I asked is because I'm on Lyrica now and it's been 2 months and people say that pregabalin and gabapentin takes a few months to be effective. I'm a little discouraged to be honest learning that it hasn't helped you..

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Re: I am so glad I have found this site :)

Post  miss.panda on Mon Oct 05, 2015 2:48 pm

It was a good few years ago I tried gabapentin and I don't remember much about it but I think I was only on a low dose - I am thinking about asking my doctor to try it again and go on a higher dose or maybe try Lyrica as I hadn't heard of that until coming on here. I just want to find something that work Crying or Very sad have you tried anything else other than Lyrica? Thanks for replying Smile

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Re: I am so glad I have found this site :)

Post  x_chelss@live.com on Sat Oct 10, 2015 6:10 pm

I just replied to your private message, but don't ever give up on trying to get better. You should never learn or accept a life living in pain. Most girls do get better so you need to believe you will be one of those girls.
Look forward to your reply xx

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Re: I am so glad I have found this site :)

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