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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


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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