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» I think I've developed vulvodynia?? Please help!
Yesterday at 9:10 pm by Necromeowncer

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:38 pm by Mel T

» New w/ Secondary Provoked Vestibuldynia
Sun Oct 22, 2017 3:47 am by Birdy

» Newly diagnosed
Sat Oct 21, 2017 9:50 pm by sarisbaris

» Prednisone Injections?
Wed Oct 18, 2017 5:07 am by sarisbaris

» Has anyone had continued success with gabapentin or Botox injections?
Wed Oct 18, 2017 4:47 am by sarisbaris

» Recent "Poke" Pain - So Confused/Losing My Mind
Wed Oct 18, 2017 2:37 am by sarisbaris

» What is Vulvodynia?
Tue Oct 17, 2017 11:57 pm by Jenjen

» CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS
Mon Oct 16, 2017 2:22 am by Sagewoman

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

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 …

Comments: 10

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


Happy Birthday to me!

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Happy Birthday to me!

Post  Mouse on Wed Sep 22, 2010 7:44 am

Well this week I'm getting another birthday. Besides the numbers getting big and scarey (beats the alternative of course) I'm not getting that loving feeling. My husband has been pestering me for present ideas - his training is complete in that area... I just don't give a crap. I don't want parcels (I may change my mind) I just want the achey bits to stop aching so I don't have to double my dose of amitriptylene pale

It took a couple of weeks to get over the dizziness, headaches and spaced out feeling. I'm still as grouchy as a bear. And now I have to do it all over again.

Whinge over!

Mouse

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Re: Happy Birthday to me!

Post  jules on Sat Sep 25, 2010 5:35 pm

Sorry you're not celebrating your birthday w/out pain. it sounds like you are down and that is to be expected. the idea of sex and wearing sexy things can actually be pretty stressful. have you considered trying something other than Amitrip.? if you are already on it and double it, i would think you probably would not experience the side effects since your body has already adjusted to the meds you're on. i have increased my meds (neurontin and lyrica a few times w/ no added side effects.) my experience w/ meds has been that you experience the side effects when first going on. i have not tried Amitrip for this disorder. however, i tried it several years ago for headaches. i felt like i was a zombie and in a dream for two weeks. i could barely do my job. i went off of it right away. i never had that problem w/ my current meds. However, if Amitrip has helped somewhat, i'm thinking it will help if you increase it.

has it helped at all? if so, how? just curious. hope you could enjoy your birthday a little. king happy birthday!

jules

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Re: Happy Birthday to me!

Post  Sarah001 on Sat Sep 25, 2010 6:13 pm

I'm now up to 50mg a day of Ami, the first 10mg made me totally woozy for 3-4 weeks but you have to give it a month to see if it will suit you. Going from 10 to 20mg made me woozy again, then 20 to 30mg made me slightly woozy but from 30mg upwards I've been fine. As long as you increase the dose gradually and give it time for side effects to settle in the early days it gets easier to increase it. Unfortunately it isn't working for me as well as I hoped, it removes burning for me but doesn't touch the soreness I get from my inflamed skin so I'll need something else on top of it next appointment I have.
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Re: Happy Birthday to me!

Post  Sarah001 on Sat Sep 25, 2010 6:20 pm

Forgot, happy birthday! I didn't celebrate mine at all this year I just felt too shit to care much!
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Re: Happy Birthday to me!

Post  Mouse on Sat Sep 25, 2010 10:03 pm

Well I flicked the amitriptylene! Horrid stuff. Out of desperation I went to my GP on Thursday. She said I have the look of someone in chronic pain - good spotting! I now have Gabapentin, I stopped listening when she read out the side effects, they were pretty grim but the first few days have been fine. She also said the twitches I've been experiencing are the bodies response to pain ie being on full alert. Nice to know I thought I was in for something else.

I had a lovely birthday dinner with my friends last night. I still didn't care enough to need parcels from hubby but he's been a wonder through all of this and the illness I had last year, the surgery and every other flaming thing that's come along since. So I consider myself pretty lucky.

Thank you for your responses. It's incredible that ami in such a low dose can be so vile, I wonder how people cope with it as an antidepressent.

Jules, I have generalised unprovoked so I have constant pain which is now settling into a pattern of extreme ugliness at the start of my cycle and in the middle. My resting pain level seems to be decreasing. I was really hopeful this was a good sign but when my period arrived last week I had some of the worst days to date. So who knows??? Sarah, I'm sorry you didn't celebrate your birthday I know what you mean about not caring, after kicking the ami I seem to have come out of a fug and hopefully will find my happy place??????

I managed to find quite by accident a really lovely specialist who doesn't think I'm mad - huge bonus there and I have a great GP who has also seen vulvodynia before. My therapist is keen to get active in helping women find solutions faster. I guess I was pretty lucky with only being treated like a fool and ignored for about 4 months I know it's not that way for everyone. My specialist did her thesis on vulval pain, she's in another city but was well worth the added stress and expense of having to travel to see her. She is so confident these drugs will work I would hate to disappoint her! It was bloody government regulations that said I had to try the ami first - assholes!

Anyway by biggest problem today is dealing with my hangover! affraid Proving you should never mix your drinks! All of that water I mixed with 5 glasses of wine, 2 cosmos, 2 black russians and finished off with a couple of kahluas! You never know what's in the water!

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Re: Happy Birthday to me!

Post  Sarah001 on Sun Sep 26, 2010 11:59 am

I think Gabapentin is what I'm going to be given next, as far as I know it's a very effective medication but alot of people I talk to on another health forum have too bad side effects to carry on with it so it's another that some people can tolerate and others can't. I'm surprised I've got on ok with the Ami, normally I get every side effect going but apart from a dry mouth I'm fine, just a shame it doesn't touch the soreness.
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Re: Happy Birthday to me!

Post  Mouse on Sun Sep 26, 2010 7:08 pm

Sarah, the gabapentin is going well so far! I have the dry mouth though, why is that? Early days to gauge any results. I seem to now be experiencing a cyclic pattern so the next ugly bit will be mid cycle. I should be well into the Gabapentin by then.

I know what you mean about reacting to everything, the ami knocked me on my ass. I was so doo lally I couldn't talk for days. I thought it best otherwise I'd still be apologising now.

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Re: Happy Birthday to me!

Post  jules on Sun Sep 26, 2010 8:29 pm

I have been on Gabepentin since January 2010. I started off at about 600 and over time increased the dose to 3000 mg. i had NO side effects at all. for me, the medication did not take away the pain until i was at least 1200 mgs. it helped a little, but over time i continually increased it. the most one can take is 3600 mgs. i finally made it to 3000 mgs and after awhile was still in pain (but, much less pain than without). then my doc added lyrica (i've mentioned this on this site before). over time, i decreased the Gabepentin. but, now i am still burning so, i am going back up a little to 2700 mgs. i was never offered Amitrip. for this disorder. In the US we start w/ the meds we and the doc agree on...(thank God for good health insurance..but, we pay for it). the Gabepentin helped me...i'm sure it will help cut the pain for you.





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Re: Happy Birthday to me!

Post  Mouse on Sun Sep 26, 2010 11:54 pm

I tried to get the good drug first and offered to pay, against regs apparently FFS! We have good health insurance but sometimes I'm still stunned about how much things cost. I didn't get pre-approval when I went to my new improved specialist and nearly fell over when I was given the bill. My flights were also covered by insurance so I was pretty happy about that!

I'm having zero side effects thus far! I think I'm on 900 at the moment. Will keep you posted!

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Re: Happy Birthday to me!

Post  jules on Tue Sep 28, 2010 1:20 am

glad you are not having side effects!!!

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Re: Happy Birthday to me!

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