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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


Hello from Northern Norway

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Hello from Northern Norway

Post  Antaea on Wed May 11, 2016 6:06 pm

Hi, very glad that I just found this forum. Today my fears became confirmed: The burning, itching everlasting pain in all parts of the vulva and the labia major is indeed generalized vulvodynia.
But let me introduce myself:
I am writing from Northern Norway, only a few hours drive south of the North Cape. Born German, I live there for nearly 30 years, teaching music at the local School for Culture. I am 66 years old and shall retire at the end of this year. I live alone after a marriage with an alcoholic long ago. I have no kids (due to heavy migraines all my life), but a precious cat-family of 5. Antaea is my pagan name, I am eclectic witch and deeply rotfasted in our subarctic nature - or in nature generally. But next year I shall move to the Swedish island of Gotland in the Baltic to live there with my sister for the rest of our lives.
I had an episode of nerve-pain in 2007/2008, when the doctor found out that my estrogen levels were extremely low. After 9 months they were normal and the pain ceased.
In March this year I had a cystitis and was treated with 3 different antibiotics. I got problems and pains in the vulva, but meant, it was due to the cystitis. But it never got away, it only became worse. Now I have it 24/7 and no painkiller, no topical treatment works.Only Tramadol takes the top of the pain at night and gives me a day with little pain the morning after. I observe all the general advices like no soap etc. But I have to admit: Pain will be a part of my life until I die. On Friday i'll start with Gabapentin, and a fortnight later I shall meet my doctor for an evaluation.
I need therapy suggestions and, first of all, input in how to live a good life in spite of the pain. I am open too for alternative therapies.
I also hope to be able to give something back to you. You can find me under my user name on Facebook too.
Whishing you a painless day in your part of the world. Here it is 8 pm.
God kveld (Good evening) from Antaea
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Antaea

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Re: Hello from Northern Norway

Post  emalita on Wed May 11, 2016 6:26 pm

Hi Antaea!

Those darn antibiotics are what do a lot of us in unfortunately. My pain was caused by 4 rounds of very unnecessary antibiotics that I had trusted my doctors to prescribe appropriately (I know better now).

I'm absolutely no expert, but I've been around the block more than once trying to relieve my pain the last 2 years. So, I'm happy to share what has and hasn't worked for me so far. Can you provide more details on your pain? You mention it is burning and itching on your entire vulva. Are any areas worse than others (e.g. inner labia, vaginal opening, etc.)? Are there any physical changes to your vulvar appearance (e.g. whitening, scarring, etc.)? Is the pain worse at any particular time (e.g. going to the bathroom, after showering, etc.)? What conditions have been ruled out for you (e.g. yeast, bacterial vaginosis, etc.)? Do you have excessive discharge that makes your pain worse?

Sorry for all the questions, but the more details you can give, the better suggestions we can provide without boring you with some that probably won't be relevant to your pain. Obviously only provide information for what you are comfortable sharing. Nothing is too much information here...we've all heard it before Wink

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Re: Hello from Northern Norway

Post  Antaea on Wed May 11, 2016 8:44 pm

Hi Emalita,
thank you for asking. That's the reason why I am here.
I have no discharge at all. After the menopause I am very dry. The pain is mainly and worst in the vestibulum and the clitoris, but can change to the inner labia. The outer labia feel like sitting on a brush. All other conditions had been ruled out. No vaginitis, no bacteria, vira, no herpes or papilloma-virus. No lichen sclerosus. The vulva looks just fine. I use estrogen-cream (Ovesterin) which is not availalbe in the States, only in Canada. I used hyaloronic acid too, but it made things worse after a time. Just now I rinse with water only every time I am in the bath room and use almond oil. I also use Lidocain topical at night and Tramadol every second day. I shall start with Gabapentin and I am very afraid of the side- effects because I shall travel 2300 km by car on June 15th with the caravan and my cat-family. More about that in a second thread.
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Antaea

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Age : 67
Location : Hammerfest Norway

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Re: Hello from Northern Norway

Post  emalita on Wed May 11, 2016 9:55 pm

Hmm...I'm just going to start rambling off ideas, and I hope some are helpful Very Happy

Since your pain started after taking antibiotics, have you tried supplementing with a good probiotic meant for vaginal health? I use Fem-Dophilus, but I'm not sure if that's available by you.

One of the first things my Naturopath and Functional Medicine Practitioner focused on was improving my gut health because a large part of your immune system is in your gut. They gave me all sorts of supplements, which did nothing, but a diet rich in whole plant foods as well as fermented foods or things like kefir can help. Unfortunately none of that made any difference for me, but it doesn't hurt to give your immune system a good boost with a healthy diet.

My specialist recommends rinsing (not spraying) the vestibule with Gordon’s Boro-Packs after every urination (I believe the brand Domeboro is basically the same thing). It comes in a powder that you mix with water in a squirt bottle. I believe one packet should be good for the whole day. I personally haven't used it yet, but the other patients of his that I spoke to said it was a life saver. It is supposed to reduce inflammation, itching, and irritation. This may be worth looking into.

Now I'm sure you know this already, but I have to add it all just in case. Eliminate all chemicals that are coming into contact with your vulva. This includes: flushable or feminine wipes (they are the devil in wipe form), shampoo (my OBGYN has me washing my hair in the sink - he says it only takes a single drop in the shower to set off a reaction), laundry detergent (I make my own, but my OBGYN recommends All Free & Clear or Cheer Free & Gentle), shaving cream (my OBGYN recommends Vanicream Shaving Cream), super soft or scented toilet paper (lots of chemicals go into making super plush TP), douches, etc.

I hope you find relief soon! Hang in there, this doesn't have to be forever Smile

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Re: Hello from Northern Norway

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