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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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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: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

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


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.
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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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