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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


New here looking for advice

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New here looking for advice

Post  Kriskin on Wed Aug 17, 2011 1:11 pm

Hi,

I was just diagnosed with vulvodynia about 2 weeks ago although I've been experiencing it for years. I'm 22 and I'm finding it hard to deal with, especially when it comes to my boyfriend. It's turned sex into something I often don't want to even try and I feel like that's pretty unfair to him.

I'm having a pretty bad 'flare up' right now and I think it's because I was wearing pads that have scent in them while riding a bike. I'm very swollen and even using toilet paper after peeing hurts a lot. I'm not going to use these pads again.

Any advice on how to bring the swelling and pain down would be greatly appreciated. And what can be used during menstruation? I can't wear tampons or pads. Currently I'm using a clean pair of underwear that I cut up as a home-made pad.

Thanks


Last edited by Kriskin on Wed Aug 17, 2011 1:15 pm; edited 1 time in total (Reason for editing : Added something)

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Re: New here looking for advice

Post  Heidi on Thu Aug 18, 2011 3:35 am

Home-made pads can work pretty well. Try a more absorbent, soft fabric like flannel or cut-up cotten sweat-pants. You can put a slip of waxed paper between a home-made pad and your underwear, too, if you want a little more leakage protection. A sitz bath with epsom salts or baking soda can be soothing (use lukewarm water). You can use a squirt bottle with water to rinse off after urinating instead of TP. You can fill a condom with water and make an "ice pack," just don't let it contact your skin for very long or you can damage the tissue. You can also just run an ice cube over the outer skin. Stop using any product with dyes or fragrances. . . These won't cure you, but each can give temporary relief when you are really raw and inflamed. Oh, some women also use "barrier" creams like A&D ointment. I never had much luck with this but I have friends who have sworn by it.
Heidi

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Re: New here looking for advice

Post  Mouse on Thu Aug 18, 2011 4:09 am

Hi Kriskin and welcome!

Sorry you have (ended up) started your V journey here Very Happy You are in good company!

Be kind to yourself. Your inability to have sex at the moment is not your fault. I'd suggest finding a therapist if you don't already have one. It can be helpful for your partner as well. I have a sex therapist, she gets it. I have a generalised unprovoked V so my issues are different but finding someone with specific knowledge it really helpful.

Have a look around, there are loads of great tips on here. Do you have a referral to a pain clinic? PT etc?

Any questions just sing out, we are all here to help.

Vicki

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Re: New here looking for advice

Post  Chinchilla on Fri Aug 19, 2011 8:54 pm

Hi Kriskin,

I find that different brands of pads are better than others. For example, I always use Kotex because they are more cloth-like, and I never use Always, because they are more plastic-like. Also I try to rarely use pantiliners, because I find they are worse than pads, and as soon as my period is winding down I quit the pads, too. I'd rather get my underwear a little dirty! tongue I also only wear white, cotton underwear.

When I am having a flare-up, I find that squirting some water (I keep a plastic squeeze bottle filled with water under the bathroom sink) on my skin after peeing really helps. Also, this doesn't always work for me, but it's worth a try when you have a flare-up: Mix a little Aveeno Soothing Bath Treatment powder with some water, keep in the fridge, and dab on to your skin. But keep in mind that if you are continually trying all sorts of different remedies, you could end up irritating the skin more and sometimes it is best to just leave the skin alone until it calms down on it's own (easier said than done, I know!).

Here are some other tips as far as preventing pain that work for me:
-Never use liquid laundry detergent. I use Norwex Ultra Power Plus powder detergent.
-Always wash panties separately from other laundry.
-I have to wear loose pants Mad No skinny jeans for me Sad
-I can't sit on any hard surfaces (like wooden chairs).
-Never drink/eat anything acidic, for example orange juice!!! Pop is also a no-no for me. I go easy on spicy food, too, and drink lots and lots of water with it.
-Sorry if TMI (but come on, this is a website about vulvas, lol) but use your hand and not a washcloth when showering. Washcloths can be very abrasive. For soap, I have found Dove Sensitive Skin to be the best.
-Go commando at night. It is good to let the area air out. This is especially helpful if you are prone to itching as well.

I wish I could give you more advice on calming down flare-ups, but I would say if you can just don't make too many commitments and if you can, just stay home and take it easy until it fades.
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Re: New here looking for advice

Post  Helpwithpain on Wed Aug 24, 2011 6:49 pm

hi there,

I'm new here as well and just posted my first blog. I'm right there with you that I feel terrible that sex is so painful that I almost fear it now. My fiance is so understanding but i still feel bad. I know it's not my fault but I also want him to feel like I want him. I try to suffer through it sometimes but honestly after it's over not only do i feel like i just got stabbed but I know it was terrible... can't do all the fun things I used to and really just want to get back to sex being fun!

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Re: New here looking for advice

Post  Zazu on Fri Aug 26, 2011 12:24 pm

Hi to both Kriskin and Helpwithpain,

Welcome to the forum Smile It's been a huge support to me and the ladies on here are just wonderful! I can relate to both your comments, especially about having sex with your partner/fiance. I'm 25 and have moved from vulvar vestibulitis (also called provoked vestibulodynia or localized vulvodynia) - the one where penetration feels like burning stabbing pain - to also having more generalized, unprovoked vulvodynia. We haven't been able to have sex for over a year now as the pain is too unbearable.
We saw a really great sex therapist/couples' counsellor together and here are some thoughts about it all that I learned. First, it's important to stop trying to have intercourse if it's painful - especially for a set period of time. Take it off the table for, let's say a couple of weeks or a month. Otherwise, you'll begin to associate intimacy with pain, crying and loss and this can have more than just a psychological impact - many women with vulvodynia end up with vaginismus if they repeatedly have painful sex. Your muscles seize up in anticipation of the pain - it only makes sense. Second, try to make specific time for intimacy. We have this myth in our society that if it's not spontaneous it's not genuine - but when you have chronic pain, it's the loving thing to do. Finally, when you are intimate, explore 'outercourse' (foreplay). Most men are perfectly happy with what hands and lips can do. More importantly, it's not really lovemaking if it's causing one person extreme pain, is it? Then, you can gradually reintroduce intercourse if you're able to - but only at those times when you're really aroused, not having a flare up and know it won't hurt. Finally, counseling is really helpful!!
A pelvic floor physiotherapist will help you the most with sex. Hope those thoughts were a bit helpful!
Best to you both!
Katie

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Re: New here looking for advice

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