Log in

I forgot my password

Latest topics
» Amitriptyline given for vulvodyina pain
Yesterday at 11:33 pm by WVR00

» Needing some reassurance
Yesterday at 12:28 pm by Katiej

» Amitriptyline Success and new-found love
Yesterday at 12:24 pm by Katiej

» New diagnosis, any advice whilst I wait for a specialist
Yesterday at 3:57 am by jungleclover

» Vestibulectomy today and no pain
Fri Nov 17, 2017 3:28 pm by Dsrt16

» vestibulectomy success
Thu Nov 16, 2017 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Thu Nov 16, 2017 12:06 am by Jgreen81

» Pain aftee vestibulectimy
Thu Nov 16, 2017 12:03 am by Jgreen81

» Freaking out because I don't think surgery worked HELP!!!!
Thu Nov 16, 2017 12:01 am by Jgreen81

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: 3

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 …

Comments: 1

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


Happy in my Skin, NZ - hello from New Zealand

View previous topic View next topic Go down

Happy in my Skin, NZ - hello from New Zealand

Post  Mary on Fri Jul 01, 2011 10:12 am

Or should I say, "hello from Downunder"...which takes on a new meaning when making a post on a Vulvodynia Support site! I really like the image you have used for the Forum. I can identify strongly with it and often have to wear long straight skirts with no knickers still...I call these "Knickerless-Days" Very Happy

I was diagnosed in 2005 after 25 years of undiagnosed vulval pain problems. I looked on the internet back then but did not find anything like what you are doing here and oh! how lonely I felt and needed to know that others were feeling what I was going through.

How I became Vulvodynia-aware is a story; but we all have stories... I can see that by the posts by other women who are on this Forum. I will be visiting this often to learn. I feel that having information is the best way to come to terms with the limitations and new possibilities that this condition has placed on my life.

Anyway, I wrote my story which was published last year and have started a blog to spread the word about this under-recognised condition experienced by women in New Zealand:
http://happyinmyskinnz.blogspot.com/2010/09/next-magazine-article-here.html

So my next post on that blog will be to "Sign Post" about you, tell about where you are and what you are doing here.
Wonderful, thank you.
Mary
www.happyinmyskinnz.blogspot.com


Last edited by Mary on Fri Jul 01, 2011 9:53 pm; edited 1 time in total (Reason for editing : Always edit my writing...reads more clearly now!)
avatar
Mary

Posts : 7
Join date : 2011-07-01
Age : 58
Location : Northland, New Zealand

View user profile http://happyinmyskinnz.blogspot.com

Back to top Go down

Re: Happy in my Skin, NZ - hello from New Zealand

Post  Mouse on Sat Jul 02, 2011 1:10 am

Hi Mary,

I'm in NZ also. I found this forum last year and I'm part of the furniture here now. We're also on FB, it's a private group so a great place to chat. We have a truly amazing group of women from all over the world. I love them so much and they have helped me through some horrible times.

I saw you on 20/20. It was a great story, thank you for doing that. The link was posted on our FB group. Getting that horrid V name out there is the only way we will get some understanding. Hopefully more publicity will stop other women being treated like circus acts by Drs and so called specialists.

I have generalised unprovoked vulvodynia so constant pain all day every day. It seems V. takes no prisoners as some women on here have a combination of both.

Keep doing what you are doing. It does my heart good!

Take care
Vicki

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

View user profile

Back to top Go down

Re: Happy in my Skin, NZ - hello from New Zealand

Post  Sassymel on Sat Jul 02, 2011 9:50 am

Hi Mary,

I'm a fellow kiwi too. Great to hear about your blog, I've bookmarked it to my favourites! I also saw you on 20/20 and thought it was great to see some proper information about V in the NZ media. As Mouse mentioned we put this on our facebook group to share and it sounds like woman from all over the world were pleased to see it and planned to forward it on - great how the internet creates such opportunities for sharing information across borders!

This forum is excellent. I'm only new to it having joined a matter of months ago but already I feel it's made a difference to feel that I'm part of a community and not alone in my plight! My V is not generalised but specific to an area and I feel blessed that I don't suffer as badly as some of the women on here. However that doesn't stop me feeling pretty blue about it at times... having this group reminds me that I don't have to go through it alone and it's so good for sharing information and ideas - what has worked for people and what hasn't etc. Of course we're all individual, part of the problem with V and it's 'cures', but it's great to feel like there are always new avenues to try!

Great to have you on here! Smile

Sassymel

Posts : 8
Join date : 2011-05-07
Age : 31
Location : New Zealand

View user profile

Back to top Go down

Re: Happy in my Skin, NZ - hello from New Zealand

Post  Sebby (Admin) on Sat Jul 02, 2011 7:54 pm


Hi Mary and welcome to the forum Smile

Love your blog and could relate to so much of what you said in it! Especially the part about intercourse making you feel like you were being attacked! I thought for so long it was due to anxiety and that pyscologically there was something deeply wrong with me. It was only till I developed constant unprovoked pain and researched it that I found out about Vulvodynia.

After a consultation with Dr Glazer and one at a Vulval clinic I found out that I had had VVS (vulvar vestibulitis syndrome) all my life that eventually had turned into unprovoked constant pain. It was a relief to find out that it was not just due to anxiety around sex. Well of course I had anxiety around sex, it had always hurt!!! I couldnt even use tampons and gynae exams were so tramatic I took valium to get through my first smear test.

I do hope that eventually Vulvodynia etc does start to get the attention and focus it deserves both from the media and medical community.

I thank you also for your link in your blog to the forum Smile if you are interested in our secret facebook group then please inbox me

Take Care

_________________
Sebby
XxX

admin@vulvodyniasupportforum.com
avatar
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 36
Location : London UK

View user profile http://vulvodyniasupport.forumotion.net

Back to top Go down

Re: Happy in my Skin, NZ - hello from New Zealand

Post  jules on Sun Jul 03, 2011 2:46 am

Hi Mary, thanks for joining us. I'm not from NZ. I'm from the U.S. Thanks for getting the word out there so other women do not suffer alone. I visited your blog. It's very impressive. I made a goal that i am going to get the word out there. I'm not sure what ave. I will take to do that....but, i will be reaching out to women and educating the community. Hope you continue to join us.

jules

Posts : 225
Join date : 2010-03-17

View user profile

Back to top Go down

Re: Happy in my skin,NZ-hello from new zealand

Post  ria on Sun Jul 03, 2011 1:03 pm



Hi a very warm welcome from Ria I live in the UK. Well done for spreading the word. A book would be good where we all write a chapter on our V journey. Every Lady on this forum has a different journey, yet we all experience it the same way. I try to use a holistic approach it works for me, we all do different things to keep the pain under control.


Wecome aboard Smile Smile Smile Smile Smile Smile Smile Smile Smile Smile Smile Smile Smile Smile Smile Smile Smile

ria

Posts : 99
Join date : 2010-07-21

View user profile

Back to top Go down

Happy in my Skin, NZ - hello from New Zealand

Post  Joolibee on Sun Jul 03, 2011 6:55 pm

Hi Mary,
Good to hear from you. I like the 'down under' analogy Smile Had a look at your blog and I'm very impressed. I'm from UK but temporarily living in France, having taken a year off work. Previously I was too busy to find out much about this condition and now can't believe the pain I put up with while doing a very stressful job. I suffered in isolation for a long time before I found these wonderful ladies here. Anyway, well done for your work in spreading the word about vulval pain. Cool

Joolibee

Posts : 36
Join date : 2011-03-09
Location : France / UK

View user profile

Back to top Go down

another kiwi

Post  cassyc5 on Thu Aug 11, 2011 4:47 am

Hi all.

I too, am a New Zealander. I am 20 years old and was diagnosed at the end of last year. I have had the symptoms for as long as I remember and just thought I must just be strange and not like sexual contact, or was asexual.
I was a victim of childhood sexual abuse, and believe that a percentage of my symptoms relate back to that. I am currently undergoing cognitive behavioural therapy, and am about to start physio (Im really excited, but also very nervous).
I would just like to say a massive thank you to Mary for the 20/20 special. I was terrified of the idea of physio and refused to let my specialist refer me, but after seeing you piece and seeing how strong and brave you were I decided it was time to give it a go.
I feel so much for everyone who has to deal with this, and so many of you have been through so much. I consider myself rather lucky, my GP had heard of the illness and had diagnosed someone before me, so when I finally got the courage to speak out about my symptoms, I was diagnosed pretty quickly. However, I was pretty confused as to what it was, as my GP had not dealt with the other ladys vuvlodynia, simply transfering her on, and was terrified when she said treatment could include surgery. So I went to the sexual health clinic in Hamilton and was presented with a ton of infomation and alot of support and guidance. I also have a fantastic boyfriend who has stood by me and held my hand through all the rough patches (and will hold it through alot more) and who encouraged me to talk about it to my doctor about it in the first place. It devastates me to know that so many people remain undiagnosed due to doctors simply not knowing about the illness.
anyways. I am happy I have stumbled across this wonderful site, and I wish everyone the best with the treatment and management of vuvlodynia.


cassyc5

Posts : 5
Join date : 2011-08-11

View user profile

Back to top Go down

Re: Happy in my skin,NZ-hello from new zealand

Post  ria on Thu Aug 11, 2011 2:06 pm

Welcome to the club Casey I live in UK. Its fantastic how we can all talk and help each other. Smile Smile Smile

Take care xx

Ria Smile

ria

Posts : 99
Join date : 2010-07-21

View user profile

Back to top Go down

Re: Happy in my Skin, NZ - hello from New Zealand

Post  Sebby (Admin) on Mon Aug 15, 2011 12:51 pm


Welcome Casey

What a great GP you have, I found that I had to ask Dr Google what was wrong with me lol I then had to inist on being refered to a Gynea.

So glad you are being given the support and info you need and that your boyfriend is so supportive

Its a difficult condition to live with and support makes all the difference

Wishing you luck with your treatment

_________________
Sebby
XxX

admin@vulvodyniasupportforum.com
avatar
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 36
Location : London UK

View user profile http://vulvodyniasupport.forumotion.net

Back to top Go down

Also a Kiwi girl

Post  red on Mon Aug 22, 2011 7:48 am

Hi all

22 yrs old from NZ too

I was diagnosed April 2010 after 5 months of symptoms and no answers. Since then I am lucky enough to have found a great sexual health dr and she has helped me come up with ways of managing the pain.

I still take it one day at a time and sometimes it is still overwhelming, luckily I have a very understanding partner
who has supported me throughout the whole thing from before being diagnosed.

I have only just stumbled across this blog and felt like I should try sharing too, it's easy to feel isolated with this condition

Is there a section on here where people post who have overcome there pain? Or so you guys know of any people who have become pain free?
It would be inspiring to read some 'success' stories if you know what I mean, but I guess people don't really post when all is going good so much...


red

Posts : 4
Join date : 2011-08-20

View user profile

Back to top Go down

Re: Happy in my Skin, NZ - hello from New Zealand

Post  naomi on Mon Aug 22, 2011 8:00 am

good idea!

we all ned some positive vibes!!

im not sure on how to add a new section, will ask Sebby!
avatar
naomi
Moderator

Posts : 262
Join date : 2010-04-09
Location : Cheltenham

View user profile

Back to top Go down

Re: Happy in my Skin, NZ - hello from New Zealand

Post  Mouse on Mon Aug 22, 2011 9:44 am

Check the "How are we all doing? discussion.

Kia ora Red!

Mouse

Posts : 303
Join date : 2010-09-09
Location : New Zealand

View user profile

Back to top Go down

Re: Happy in my skin,NZ-hello from new zealand

Post  ria on Tue Aug 23, 2011 5:51 pm

Hi, yes it is good to get positive feedback. My problem is I sometimes feel I am doing ok then whoosh discomfort is nagging at me again. My V is unprovocked so I have constant background pain. For me Yoga helps and exercise, also meditation and Reiki /prayers. When I feel good I can do all the holistic therapies on myself, but crash bang outta the blue I am curled up like a cat feeling sorry for myself, racking my brain where the hell did it come from, and when the hell is it going to go away. Oh and yes I have seen all the professionals and no one really knows what it is causing it, so they try to numb the nerves with Gabapentin which sometimes works then other days doesnt.

I feel like a detective always piecing the information treatment together to find the cause of it all.

Read all the info and you have to do what you can to stay on top od the discomfort.

Take care Honey xxx Ria Smile

ria

Posts : 99
Join date : 2010-07-21

View user profile

Back to top Go down

Re: Happy in my Skin, NZ - hello from New Zealand

Post  red on Tue Aug 30, 2011 1:56 am

Thanks Ria and everyone

my V is unprovoked aswell and I totally know what you mean about the constant background pain that you never know if its going to get better or worse,

I find that the pain is less when my mind isn't focussed on it, if im at my part time job or out. I have just begun seeing a Psychologist who is going to help me with the anxiety surrounding the pain,

I really do think the pain is amplified by me constantly checking in on what my pain is doing, maybe making me even more sensitive to smaller irritations then I should be.

Part of what she has me doing is about trying to focus on being in the moment through breathing and focussing purely on the sensation of the breathe in and out, and as the thoughts intrude just acknowledge them and let them fade or move them aside. actually so hard!!

I also take 20mg nortriptyline, use lidocaine gel and use dialators when i can manage it.

I wonder if it is worth trying the calcium citrate tablets (has this worked for ppl?) its so easy to feel like your in limbo with this condition when you aren't trying something new...



All the best



red

Posts : 4
Join date : 2011-08-20

View user profile

Back to top Go down

fellow nzer!

Post  bjs156 on Thu Dec 27, 2012 12:29 am

Hi everyone, im also a New Zealander from chch, wondering if theres any other sort of fb groups or anything still happening as a feel a bit lost and confused as to where to go next! im only 20 and still finding it hard to get my head around

bjs156

Posts : 3
Join date : 2012-12-26

View user profile

Back to top Go down

Re: Happy in my Skin, NZ - hello from New Zealand

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum