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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


Another Newbie

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Another Newbie

Post  toobusy on Thu Mar 31, 2011 8:34 pm

I am 43 married with two children 6 & 7. Four years ago my husband and I left our regular jobs to run our own business. When we left our jobs we also left health insurance. Two years ago I was diagnossed with Fibromyalgia and hypothiroidism. Both are under control with mild medications. In Dec. I got a sinus infection which led to antibotics....2 rounds which of course led to a yeast infection. Then came bacterial infection, a UTI, another yeast infection, UTI and Yeast again! I finally kicked the yest and ensured no UTI with the Candida diet, Pro-B and Cranberry supplemnts. Thought I was in the clear...then this irritation that would not go away...and it got worse! Here I am in the process of being diagnossed with possible Vulvodynia.

This is crazy...one day I am going along and the next things are buring and I don't know what to think. I don't have time for this, not like anyone does. I am good dismissing pain once I know what it is but, this may be a bit more difficult!

Does anyone know of any herbal supplemnts or booster that could help? If I correctly understand this is an autoimmune disorder and is the fibromyalgia. Concerend with medical test and procedures without insuranse.

toobusy

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Re: Another Newbie

Post  noni on Fri Apr 01, 2011 12:08 am

Hey toobusy!

Welcome!

So what is vulvodynia exactly? Good question!!!

Well, most believe that it can be due to any number of things, such as: skin condition, nerve irritation/entrapment, pelvic floor muscle issues, or re-current yeast that once treated pain never goes away.

I was diagnosed with neuropathic pain of the vulva...esentially nerve damage/irritation...which has caused other problems like severe muscle spasms, ie vaginismus.

In terms of natural approaches to the treatments...yea...I dunno...alot of us gals are on anti yeast and anti gluten diets...relaxation...accupuncture...meditation...physio for the floor muscles...

I cant really recommend anything natural per se...as it didnt do jack for me....Im on Elavil for the nerve pain 40mg, some of the lovely ladies on here take pregablin....

My appraoch is a combination of: meds, proper nutrition, sleep, and relaxation for my V.

Its really a crap shoot for this! Still, there is hope for relief. This thing strikes out of nowhere at any age it seems...its a bit of a mystery.

Have a looka round on the forum!

Cheers!
noni Smile



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Re: Another Newbie

Post  Sebby (Admin) on Sat Apr 02, 2011 4:21 pm

Hi toobusy and welcome to the forum

As noni says there are a number of theories on the causes of Vulvodynia.

As for natural medicine, I am currently doing pelvic floor bio-feedback and also use water spray and vaseline after unrination. I have had to look to conventional medicine for painkillers as I do not know of anything natural that would do the job.

Im currently on 300mg of Pregabalin and it helps to control flare ups. My flare ups coincide with my periods (the use of pads/tampons). They tried to stop my periods with Cerezette but I bled for 3 months on and off and still had pain and was too dry when they stopped

Other things that help are:

Wear only 100% cotton knickers/panties (im from uk so getting used to speaking in us terms lol)
Do not use any bubble baths etc, only let water touch your vulval area
Wash knickers/panties on high temp 60 or 90 degress with no detergent. If you feel you must use detergent then use non bio and give them an extra rinse. High temps are enough to kill any bacterias
I am cutting down on sugars and wheat (I see you have done the anti candida diet)
Get a foam doughnut cushion (with a hole in the middle) to sit on at home so there is no pressure on the vulvar

The term Vulvodynia simply means vulval pain and is what they tell you, you have after they cannot find a simply cause such as infection or skin disorder


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Re: Another Newbie

Post  Sebby (Admin) on Sat Apr 02, 2011 4:22 pm


Oops I pressed send before I wanted to!

Anyways, dont be afraid to come on here to vent your feelings and to get support

Take Care


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Thanks

Post  toobusy on Sun Apr 03, 2011 1:48 am

Thanks for the info ladies. I will keep searching and trying new treatments, will let you know what I find. By the way...officially got the diaganosis and doctor recommended a special physical therapist who specializes in treatment of vulvodynia and related problems. The Dr. says there are only a few in the country and we have one in NJ. Not sure how accurate that is but, I guess I have nothing to loose by calling. Anyone going to this type of physical therapist?

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Re: Another Newbie

Post  noni on Sun Apr 03, 2011 1:20 pm

Hey toobusy,

I will be trying this approach in time.

I know that mouse is doing some type of physio...you could ask her.

take care,
noni
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Re: Another Newbie

Post  Mouse on Sun Apr 03, 2011 7:49 pm

Hi toobusy and welcome!

I'm sorry you have found yourself having to join us but you are in good company. We are all searching for answers and being proactive about improving our health. Well most days, sometimes we just howl at the moon but that's ok as well.

Things that I believe have worked for me are - diet modification!!! I am sugar and gluten free, the gluten is because I have celiac disease but the sugar is to reduce acidity. I've had a huge improvement since I started that. I drink a lot of water, limit coffee and alcohol. I meditate, try to find as many natural feel good chemicals as I can, they are hard to find sometimes. I do PT and that has also made a huge difference, she does trigger point therapy and I also have acupuncture as I've annoyed some other nerves as well. I would think any womens health PT could help you. When you think about it there are a lot of reasons the pelvic floor gets irritated in women. I have a friend who has a torn muscle from childbirth and then there are prolapses and incontinence which can also be from childbirth or the pelvic floor becoming weaker with age. If you can't get into the one your Dr suggested have a look around for someone else.

I also think getting out in the sun, enjoying time with friends and family or trying to be social improves your mental health. Try for good sleep patterns so create an environment that helps you sleep well ie not too much stimulation before bedtime, low lights and good curtains etc.

Oh get a therapist! While this isn't in your head it's a hard condition to live with so unloading all the crap in a safe environment works wonders for most of us. In fact this would be number one on my list. My therapist helps me sort what seems like a huge mess into neat little compartments.

And I also believe that having sex if you can helps to heal. Check out Sarah's consult with Dr Glazer. I have generalised V so I can have sex without pain, well mostly - I have unprovoked pain all the time.

Ooops work time!

Good luck
Vicki

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Re: Another Newbie

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