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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 6

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

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: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

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


Happy in my Skin, NZ - hello from New Zealand

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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!)
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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

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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

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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

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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.

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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

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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

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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.


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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

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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

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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...


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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!
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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!

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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

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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



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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

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

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