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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 …

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

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 …

Comments: 6

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

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: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


Hi I'm just over this feeling ...

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Hi I'm just over this feeling ...

Post  Louise on Thu Jan 27, 2011 8:36 am

Hi, I'm new to health forums but am very relieved to find this site.. I am 28 yrs old from Perth Western Australia and my pain started a last year in June 2010 around this time I had numerous doctor consoltations where I was prescribed Canesten and other oral medication for thrush as well as antibiotics.
I finally managed to secure an appt with Gynecologist around November last year however he recommended for me to see another Gynecologist that apparently specialises in nerve pathways in this area... however after I had been given the run around for so long and being told I couldn't see her for months I gave up. My next appt is at the start of March which I'm really looking forward to.. I feel helpless a lot of the time and it's hard because I don't know when I'm going to get the horrible intense burning sensation next, I feel like a terrible girlfriend as I avoid sex it hurts. I was wondering if it was common to see protein in your urine when you have Vulvodynia as at times I see white flecks?
I hope we all get better soon, I wouldn't wish this on anyone.


Louise

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Re: Hi I'm just over this feeling ...

Post  Sarah001 on Thu Jan 27, 2011 12:39 pm

Hi Louise and welcome. Don't worry about the white flecks in your urine, everyone gets those whether they have vulvodynia or not. Funnily enough that was something I wondered about in the early days too but after alot of research I found it was completely normal and men get white flecks too so nothing to do with vulvar pain.
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Re: Hi I'm just over this feeling ...

Post  noni on Thu Jan 27, 2011 3:51 pm

Hey Louise welcome!

You have come to the right place for support and advice.

Yeah...I wouldnt wish this on my worst enemy...its a challenge. And worst of all this infiltrates every aspect of your life, self image, and well being.

Hang in there...

I have a website you can visit for additional info...

www.livingwithvulvodynia.ca

If you guys have further suggestions for my website feel free to comment.

And no....I am not selling anything on there, its just advice type stuff.

thx, much love
noni
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Re: Hi I'm just over this feeling ...

Post  Sebby (Admin) on Thu Jan 27, 2011 8:13 pm


Hi Louise and welcome

Have a look around the forum as there is a lot of useful information on different treatments and theories etc...

I do hope you have more sucess at your next appointment.

I get so fed up with being passed around like a rag doll cos the drs dont know what they are doing..it really makes me wonder if Vulvodynia is even touched upon in their training!

Ive not noticed white flecks in my urine but maybe its cos I dont look lol...

Take care and I hope you find the forum a source of support

Sebby
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Re: Hi I'm just over this feeling ...

Post  Mouse on Thu Jan 27, 2011 9:27 pm

Hey Louise and welcome, no one wants to find themselves looking for one of these forums but here we are all the same Smile

You will find a wealth of knowledge here and can also ask anything. There's nothing that makes a Dr stutter more than direct questions about awkward stuff. Has anyone suggested a referral to a vuval clinic? There must be one at King Edward (I had my babies in Perth - not there though).. owww I googled and found their guidelines for treatment. Interesting that they recommend physio before ami, I got the drugs first. We have all had varying levels of success with drugs, I'm not a great candidate but others have found them helpful. A physio who specialises in the pelvic floor is a good idea as well then you can find out what your pelvic floor is doing/or not doing. I'd recommend a woman, it's a level of awkward I wouldn't want to share with a man!

http://www.kemh.health.wa.gov.au/development/manuals/O&G_guidelines/sectionc/7/c7.8.pdf
http://www.lifecare.com.au/allied-health-services-womens-health.html
http://www.lifecare.com.au/findcentre.php?page=centres_wa
http://www.vulvodynia.com.au/cv.html

Sometimes you have to find the answers yourself, I did, my gyny was useless. All those years of med school don't guarantee they paid attention in the vulval class. Finding a vulval pain specialist is probably the most helpful thing. I found mine at the vulval clinic at National Womens in Auckland. My womens physio, across the road from my house - awkward! Oh that's the most used word in my vocab now.

When you have a chronic pain condition (which vulvodynia is) waiting months for an appointment is bloody impossible. Get googling and see what you come up with. I'd also recommend finding a good therapist, it's a lot to deal with. When it was suggested to me I was bloody furious but she's turned out to be the person who has helped the most. Doing this every day can be soul destroying and unloading in a safe environment helps a lot. Mine is a sex therapist so has specific knowledge. I tell people she's my pain therapist though Smile

We're also on FB. It's a private group, only 16 of us but it's great to see we are just normal people with pains in our hoo-ha's. Email Sebby if you want an add.

Good luck hon and feel free to ask questions. I've been doing this about the same length of time you have and it's hard not to let it take over. It's also bloody hard to act "normal" but I don't know WTF normal is so that helps Smile

Take care
Vicki

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Thank you!!

Post  Louise on Fri Jan 28, 2011 2:01 pm

Hello, I just have to say a HUGE Thank you for responding to me I feel like my spirit has lifted already! Just to let you know I recieved a phone call this morning advising me that there has been a cancellation at my gyno's and I am going next week!!(perhaps the receptionist did feel sorry for me when I was in tears the day I called to make an appt afterall?..)

I finally don't feel alone and I've just told my mum and boyfriend about this group and all of the lovely kind words/ advice you've all given me, I also told one of my girlfriends but I'm convinced she thinks I'm a hypercondriac haha great...

Vicki you are too kind I actually feel like I want to cry thank you so much for sending the link to King Edward it's so strange I've actually been saying to my mum "I can't take this anymore I just want to rock up to King Edward hospital and beg someone there to help me" I'm definately going to try one of the gynos at King Edward next. My mum knows a good male dr there but I am a bit put off going to a male gyno, the last one was nice and referred me to another gyno who specialised in nerve damage etc but this last gyno said that I should "finger myself in the shower" I was so embarassed I couldn't even repeat to my mum what he said and its only just recently that I told my boyfriend about it (should that be reported?), that gyno kind of made me feel like I was imagining the pain in a way (glad I got that off my chest)...if this appt next week isn't successful I will definately look into the King Edward option for sure! It's so expensive going to all these appts as well..

Sarah thanks for letting me know about the white flecks..I never noticed them until the burning started,I appreciate that. Thank you Noni and Sebby for all of the info you have put my mind at ease. I think you are all angels Smile

One last question the last time I used canesten it burned like crazy, I think it made my situation worse is that normal for Vulvodynia sufferers?

Having to deal with this has made me appreciate how important your health is and not to take anything for granted, that all you can really ask for in life is good health.

Love x









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Re: Hi I'm just over this feeling ...

Post  Mouse on Sat Jan 29, 2011 12:35 am

Hey Louise,

I am so glad you got an appointment and truly hope this specialist knows what to do. Sometimes gynys are more your general mechanic and you may need a sub specialist but it's a great place to start.

My gynaecologist was treating me for something else and the pain triggered after surgery. She just said she didn't know what it was - end of story. I would have suggested opening a book but she wouldn't give me an appointment. So I used Dr Google, diagnosed myself on the internet and found my new improved specialist on my own. She's fab! To my surprise my GP was fairly knowledgeable as well, that little gem of information could have saved me months of anguish.

I wouldn't get too worried about the fingering advice. The shower is relaxing and dialators are commonly used to expand the area - it's kind of the same concept. So don't freak out too much, maybe he didn't explain it that well. I much prefer a female "anything" this thing is so bloody awkward it's not funny.

I know what you mean about friends not getting it. One of mine said I thought you were ok now, because I'd had a few painfree days before Christmas. Even my husband can be a bit dim, these holidays have been quite stressful because he's wanted to be out doing things and I just can't. I gave him an article on chronic pain I found lurking in my handbag yesterday. He's got a whole new understanding now.

http://www.mindfood.com/at-chronic-pain-ruling-life-health-body.seo

I have generalised unprovoked V which is a wee bit different, I don't get it but thrush is very common for people with vulvodynia.

Check out the links, this is the same info my specialist gave me.

https://netforum.avectra.com/temp/ClientImages/ISSVD/4c9d4ec4-2e90-4a81-9a36-8467863002f4.pdf
https://netforum.avectra.com/temp/ClientImages/ISSVD/4bdef72c-ba47-4279-ad43-9e3d33bcc7f5.pdf

Cheers Vicki

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Re: Hi I'm just over this feeling ...

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