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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


My almost 4 year old was diagnosed today

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My almost 4 year old was diagnosed today

Post  HazelsMum on Mon Aug 01, 2016 11:50 am

Hello

This morning my daughter was diagnosed with Vulvodynia. She has been suffering pain since she was 18months and it has taken over two years to get referred to a paediatrician who diagnosed her.

Her symptoms have been intense pain, normally at night. Now she is older she can tell us about it and she says she feels like her 'front bottom's is on fire. She is SO SO distressed when happens. Nothing consoles her. It is really upsetting for anyone who is with her as well, my poor dad was babysitting during one epidode and had to be talked out of calling an ambulance.

Whilst she has had some pain in the day, it normally only occurs at night. Her only relief is a cold pack between her legs, but that only helps a bit. Our GP ruled out UTI, thread worms and thrush.

The paediatrician this morning told me that she was very likely to grow out of it but to come back if it gets worse. I left feeling really reassured until I came home and Googled Vulvodynia....nowhere mentions growing out of it. I am really worried for my daughter now and her future well-being and relationships.

Does anyone have experience of very young children diagnosed with this?

HazelsMum

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Re: My almost 4 year old was diagnosed today

Post  emalita on Mon Aug 01, 2016 4:20 pm

I'm sure you've ruled out irritants, but I wanted to throw it out there just to be sure. Below are some of the top ones that come to mind, and just remember, it can take months or years for a reaction to show. So don't rule out things you've been using on her for a long time.

- Wipes: I was using flushable wipes for MANY years before I started to have a reaction to them. If you're using them on your daughter, it may be a really good idea to stop for a month or so to see if things improve.

- Laundry Stuff: Detergents, dryer sheets, fabric softeners, etc. Even the ones that say they are "gentle" contain tons of chemicals. Check out this website for the ratings of common laundry products: http://www.ewg.org/guides/subcategories/49-LaundryDetergentHE

- New Clothing: I have an allergy to unwashed new clothing where I break out into a bodysuit-type rash if I even brush up against unwashed clothing. I now need to wash my clothes at least 3 times before wearing them.

- Bath Products: Shampoo/conditioner, soap, body wash, bubble bath, etc.


I'm sorry your daughter is going through this, and I hope she finds relief soon.

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Re: My almost 4 year old was diagnosed today

Post  HazelsMum on Mon Aug 01, 2016 4:40 pm

Thanks for replying. My daughter has quite bad eczema so we are already pretty carefully with detergents chemicals in the house. She has special soaps etc in the bath. We've found no relationship between what's she's done during the day .(swimming, bath, what's she's eaten) and when she has an episode. It is so frustrating. I really want to be able to pin it on a particular trigger but haven't been able to identify one.


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Re: My almost 4 year old was diagnosed today

Post  emalita on Mon Aug 01, 2016 4:51 pm

My reactions didn't show themselves for maybe 24-72 hours after coming into contact with the irritant. So make sure to be expanding your daughter's symptom journal to things that she's come into contact with the last 3 days or so since chemicals have a sneaky way of hanging out in the body for a little bit before setting off a reaction.

It sounds like you've already done all this, and I'm sorry if I'm telling you things you already know. I just know how frustrating allergies can be since it took me so many years to identify my triggers because they were never as "obvious" as doctors and the internet made them sound like they should be  Wink

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Re: My almost 4 year old was diagnosed today

Post  Toobusy9561 on Fri Aug 26, 2016 9:52 pm

How did the doctor rule out worms?

I ask because there is an old thread on another site about children having pain, mostly at night. Once the lights are out. Many of them did the "tape" test and was negative but persisted and were able to see a worm. Apparently, they come from the rear but move up into the vagina as well and that's where the pain is. Some would wait until their children fell asleep and then flick on the light and do a quick check but others said to wait until they are sleep, use a flashlight and look because the light makes the worms pull back in so you won't see them.

Their descriptions of their children's symptoms sounded like yours. Some even had it for years.

It was also suggested to try a worm medication anyway just to be sure. These girls were in pain but once they treated for worms, they were fine.

I'm not sure if we can post off site links. If we can, then I will post it so you can read about it.

If not vulvodynia, then possible Lichen Sclerosus? Children are known to get this. Usually the vulva skin will have white patches or areas though.
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Re: My almost 4 year old was diagnosed today

Post  Pavloviandoggy on Tue Oct 04, 2016 3:27 am

Has the doctor ruled out lichen sclerosus? Vulvodynia-like symptoms can present themselves when girls are really young, but usually don't get diagnosed until later in life.

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Re: My almost 4 year old was diagnosed today

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