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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


I'm so glad I found this forum, because nothing else seems to have worked!

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I'm so glad I found this forum, because nothing else seems to have worked!

Post  katerebecca on Fri Jun 10, 2011 7:58 am

Hi, I'm a Sydney girl who has been very unwell for about 15 months now. I've always had gyne problems, which turned out a few years ago to be endometriosis, which my Dr operated on successfully. This whole saga started last year with what I thought was thrush which wouldn't go away, and I was given boric acid for it, and then I seemed to get what I thought was a UTI, and so went on antibiotics, but the pain got worse so it was assumed that I had a pelvic inflammatory infection, and so was given even stronger medication. Pain continued to worsen and so after xrays and ultrasounds I ended up in hospital for a laparoscopy, but my Dr said my pelvis was absolutely fine. It must be, he said, my bowel. So I waited for my appointment with a gastroenterologist, who said there was nothing wrong with my bowel. And so then I waited for four months for an appointment with a vulval gyne, who spent months trying to diagnose me, working down the list of possibilities with meds (flucanozole, cortisone, endep) and physio until she too said she'd run out of ideas. And so I'm now waiting to see a pain specialist who I'm really hoping can do something, because as it is I cannot work, walk, sit or drive comfortably, have sex or generally do anything much. Finding this forum has been amazing as I at least know that I'm not the only one with a mystery-illness and that there is some hope of finding relief. Thanks ladies for sharing!

katerebecca

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

Post  noni on Fri Jun 10, 2011 9:42 pm

Hey girl,

Im so glad you found this amazing forum! You can thank the wonderful Sebby for that Smile

Basically, for a lot of us, we feel totally alone in this. Either doctors tell us were nuts, dismiss us, or totally give up on us. Thats why you just need to be extremely emotionally and mentally strong -- because, physically you may feel like crap. Plus, most people dont get it. This isnt regular pain, its nerve pain. It has a mind of its own.

God bless Mouse for suggesting mindfulness meditation...although im not there totally yet...one thing stuck out in the mindfulness CD...in this life everyone experiences pain, but suffering is optional. I will try doing that more!

Anyways...I hav ebeen on Amitriptyline...but honestly either its not working anymore or works on and off...hard to tell.

Whatever.

Take care girl!

Noni

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noni

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

Post  Mouse on Sat Jun 11, 2011 3:00 am

Hey hon!

I'm so glad you found us as well. Mostly we have a similar story - a series of Drs who have no bloody idea! Of course vulvodynia means pain in your girl bits so not really a diagnosis if you're lucky enough to get one!

I think a pain clinic is a really good option. Managing the pain is essential.

I'm keen on lifestyle changes as well. Be kind to yourself. Try to get rid of sugar, coffee ... sorry alcohol. Quality sleep is good if you can get it. Relaxing baths if you can. Meditation and therapy are my favourite things. I see a sex therapist (OH MY!!!) she has a few clients with V. Managing all of this is hard work so unloading all your crap is a good idea.

Thanks for the blessing Noni - right back at you Very Happy

Mouse

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

Post  lisa98 on Sat Jun 11, 2011 9:23 am

Welcome to the forum, nice to have another Sydney girl here. Smile

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I am so glad I have found this forum

Post  ria on Sat Jun 11, 2011 1:36 pm


Welcome Lisa there is a vast amount of knowledge from the Ladies on this forum.


Ria Very Happy Very Happy Very Happy Very Happy Very Happy

ria

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

Post  Ozgirl on Sun Jun 12, 2011 11:43 am

Hi there - i am only very new here but got diagnosed with VV ( at 26) years ago after suffering from it since I was a young child. Anyway - I am also from Australia and was wondering if you have been put in touch with Dr Marek Jantos? He is a leading expert in Vulvodynia, based in Adelaide but has clinics in most capital cities ( including Sydney). His diagnosis and then treatment improved my VV by about 80% using biofeedback and dilators ( giving birth improved it the other 15%). Anyway - if you are interested let me know and I can give you his details or you can Google it. Checkout his website www.vulvodynia.com.au or jsut google his name.

Ozgirl

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Marek Jantos

Post  Aussie on Mon Jun 13, 2011 11:50 pm

I also saw Marek and his treatment has also improved my pain by about 80% highly respect this man for his knowledge and understanding. I am still aiming for 100% though!!

Aussie

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

Post  Louise on Tue Jun 14, 2011 11:17 pm

Hi, welcome to the group!

I'm from perth & found this group one night last year when all my V problems started,which was pretty much the same way as yours did. The ladies here are wonderful you should join the private fb group as well, just to let you know my v has improved immensley after numerous dr appt, gyno appts, different creams & physio I found I had to stop using creams (ami etc) altogether as it was only making my situation worse! however everyone is different but change of diet & if you can lighten your stresses somehow (easier said than done when your stressed out in pain, I know) does help...

We are all here for you... Very Happy
xxx

Louise

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

Post  katerebecca on Wed Jun 15, 2011 1:39 am

Thanks everyone so much for the ideas and support-it makes everything a little bit easier. I have been trying madly to quit sugar, but I've always been a sugar fiend and with not much in the way of distraction it's been a bit of a fail. I have managed to cut out alcohol and coffee, mostly, but I think that was easier as I've had very little social life in the past year! Reading stories of people actually getting better is really great, so thanks again for sharing!

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Re: I'm so glad I found this forum, because nothing else seems to have worked!

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