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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, …

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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 …

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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 …

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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

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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officially diagnosed....

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officially diagnosed....

Post  julia on Mon Aug 02, 2010 9:44 pm

with vulvodynia. by my gyno, so i'm an official member of the club now unfortunately! the consultant will write to my gp for me to take amytriptyline as i have done previously. Thought I would tell you all the news, but I'm in a weird mood about it after 3 years of waiting for a diagnosis, here it is.

xxx

julia

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Re: officially diagnosed....

Post  Sebby (Admin) on Tue Aug 03, 2010 11:36 am


Why on earth does it take them 3years to diagnoise! Its silly...I had to diagnoise myself and eventually the gynea agreed!

Welcome to the club then, I should make up sum sort of memebership badges lol Lets hope we will all be members of the 'Im now out of pain' club very soonnnnnnn!!!

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Re: officially diagnosed....

Post  Julie on Wed Aug 11, 2010 6:55 pm

I was just prescribed amitriptyline (elavil) today as well... any progress? I didn't know how I felt about the idea of it being a nerve/pain receptor problem but any relief would be good!

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Re: officially diagnosed....

Post  Sarah001 on Wed Aug 11, 2010 7:19 pm

Funnily enough I keep being sent away with information leaflets that imply Amitriptyline is a temporary thing for vulvodynia and after 6 months or so most women should be able to come off it but that's not what I'm reading online from real women!

I was really worried about side effects from the Ami when I was given it for my musculoskeletal pain and the majority of people I told didn't help by claiming it would make me "like a zombie" and "completely loopy" so I started by chopping the tablets in half and taking half the dose to see how I felt. After a couple of weeks I'd got past feeling drowsy so I went to a whole tablet and the drowsiness started again so I'm working my way through it again until I up the dose some more. I get a terrible dry mouth with it though and have to drink nearly constantly to be able to speak!! If you keep taking it the side effects do actually seem to decrease as your body gets used to it so it's not too bad and I would liken the drowsiness to how I feel if I have a big glass of red wine so it's quite nice as long as you don't have to drive! I'm not at a high enough dose to get much pain relief yet but I'm working on it.

What bothers me is just because we can't feel our clothes rubbing on the skin and making it redder and sorer doesn't mean it isn't still happening so I try and stay sensible about what I wear and do etc.
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Re: officially diagnosed....

Post  julia on Tue Aug 17, 2010 1:03 pm

that sounds so bad Sad

I was on amytriptyline for this beforea bout 2 yrs ago. I can't remember how much it helped because I was on a cocktail of a lot of different things at the time.

But I do remember when I came off of them I felt very low.. damn antidepressants.

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Re: officially diagnosed....

Post  Sarah001 on Tue Aug 17, 2010 1:46 pm

Do you know Julia I find if I miss one tablet I get really irritated! They must be having a calming effect on me I think. My partner says I'm a naturally irritable person so when I don't take a tablet I revert back to my normal self Rolling Eyes but it feels alot worse than that and I feel so annoyed all the time. For the first few days I took them I actually felt very depressed and down but it does say in the leaflet they can do this. Weird isn't it? An anti-depressant makes you more depressed to begin with! I'm not a fan of taking medication but I frankly can't deal with all my joint pains, the Fibromyalgia and this hateful vulvodynia without them so I'm resigned to a life of medication now.
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Re: officially diagnosed....

Post  Sebby (Admin) on Tue Aug 17, 2010 7:33 pm


Im on Citalopram and Buspirone for anxiety anyway so I dont think it would be a good idea to change to another anti depressant..I do think I would get side effects.

Im pretty scared also of trying the anti-convulsants as they have a warning of increased risk of depressive symptoms.

I used to self harm so I have to be careful

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Re: officially diagnosed....

Post  Sarah001 on Tue Aug 17, 2010 7:39 pm

What about good old fashioned co-codomal Sebby? It's quite a good painkiller if you can take it with your other meds.
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Re: officially diagnosed....

Post  jules on Thu Aug 19, 2010 2:36 am

Hey everyone..i have written under other topics..this is to Julia. If the amitrip. does not work, try Lyrica. Lyrica has taken my pain away by about 95%. it has been a miracle for me. it is used for people w/ fibromyalgia. I like others, have tried everything else. i never did try amitrip. but, tried it years ago for headaches and for me..i became a zombie. i have had no side effects w lyrica. i'm on 150 mgs. can go up to 300%. i am slowly tapering off my neurontin (was at 3000 mgs)...that helped cut the pain by about 40%. now that the pain is controlled, i am doing physical therapy. i am working w/ a pelvic pain specialist. i am truly hopeful that this will get even better.

keep on trying! if amitrip. doesn't help try Lyrica. I am so happy.

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Re: officially diagnosed....

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