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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, …

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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Aloe Vera Gel

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Aloe Vera Gel

Post  Sarah001 on Mon Aug 22, 2011 11:12 am

Anyone tried aloe vera gel as a topical treatment? Yesterday I got an email about the Yes lube and decided to investigate as I have to wear some form of lube all day to avoid friction. I found a few "yestimonials" supposedly from women with V and VVS and also some info that states the water based version gets absorbed by the vulval skin and improves tissue health. Now this intrigued me because I'm one of us girls with inflamed skin in the vestibule and I wanted to know what made that happen so I checked out the ingredients and it seems to be mostly aloe vera. A quick search for aloe vera on Google and it's the aloe vera that tissue absorbs and also has anti-inflammatory qualities. Has anyone tried it topically? I'm not sure if it will set my skin off but fully intend to give it a go and see what happens, I've ordered a small bottle of the Yes water based plus a tube of aloe vera gel should it go well (I can always use it for other areas should it not and the actual gel is way cheaper than yes). Just wondered if anyone has any input about this?
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Re: Aloe Vera Gel

Post  mmorgan on Mon Aug 22, 2011 2:34 pm

I had a co-worker whose husband had been badly burned by tar. She applied aloe vera to his burns everyday and he ended up with no scars. Aloe Vera is truly a miracle plant, you can just about find it growing in everyone's household here in Texas. Very Happy I hope it works for you as I've seen it work for many other people though none-vulva related.

Also I've heard many people say to drink aloe vera water, it's suppose to heal also.
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Re: Aloe Vera Gel

Post  Sarah001 on Tue Aug 23, 2011 11:49 am

Thanks for that input, I have no idea why I didn't think to try it sooner since it's even mentioned on the vulval pain society website as something to use. It may work or it may not but I'm definitely going to give it a try. Not sure I could grow an Aloe plant here in the U.K, does it need to be especially warm for them to grow? If so definitely not!! And I'm terrible for keeping plants alive so perhaps I'd better stick to the gel!!
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Deasert Harvest Aloe

Post  Aussie on Tue Sep 13, 2011 12:45 am

Hi Sarah,

Deasert Harvest do an Aloe in a cream that is used for internal pt or a topical soothing lotion for vulvodynia.

As for the yes water based lube it is the best I have tried. Very impressed. no irritation.

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Re: Aloe Vera Gel

Post  Sarah001 on Thu Sep 15, 2011 12:45 pm

I've found the Yes lube isn't as good as plain old Aloe Vera Gel but I'm using it for daily lubrication on sore skin not sex so that may be why, I'm still not anywhere near the having sex again stage but it isn't a huge issue right now as I don't have a partner. The only problem with the A.V gel is it needs reapplying after every pee as it's water based but it is very soothing should anyone else be thinking about trying it.
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Medication for Vulvadynia

Post  Kay_star on Sun Sep 18, 2011 5:05 pm

Hey Sarah001
Are you the girl from the UK? I haven't been on this forum and cannot find my old posts.

I don't know if you remember but the last time I was on here I said I was going to the GUM clinic to try and get treatment. Well I did just that and was prescribed Amitriptyline 10mg which is normally for a 10 week course. After 5 days of taking them I felt as though there was an improvement but the urethra still felt odd after peeing. I was told by my dr that I must give time for tablets to work. However after 6 weeks of taking them, it's coming back again. I was doing quite a bit of exercise, not sure if this has aggravated it. I started feeling itchy on the vulva which then turned to pain. I'm feeling a rawness on my vulva and feels as though it's being stretched and pulled. Now having dull pain on the vagina.

How are you getting on with the your pain? Are you taking anything that has helped relieve your pain? Some people are having baths in baking soda and using peroxide hydrogen to relieve the pain. Im too scared to do that in case i make it worse.

I just pray that I meet a nice man who will be patient with this condition. Im avoiding meeting men because I am so ashamed of this conditon.

I wanted to come back on this forum and tell you all how the treatment has done wonders but instead im crying about it again. How do you deal with this everyday? This is always on my mind and its damaging my mental well being. I wish it just goes away for good.

Hope all is well with you and you have found treatment to at least control it.

Thanks

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Medication for Vulvadynia

Post  Kay_star on Sun Sep 18, 2011 5:10 pm

Sorry Sarah001, of course you are the girl from the uk. Just saw your profile. My head isn't with it today. I'm going back to the Gum clinic this week to see what the Dr can do for me. He did say he gets alot of ladies who come to him with the same condition and treatment has worked for them. He's a good Dr and the only one who i have come across who is willing to help so i am grateful.

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Re: Aloe Vera Gel

Post  Sarah001 on Sun Sep 18, 2011 7:44 pm

Hi Kay_star, firstly 10mg of Ami is a teensy tiny dose so don't worry too much if it doesn't help yet. I got to 50mg before I realised it wasn't going to do the trick but some girls have luck at much lower doses. I'm now also on 300mg of Lyrica a day which helped a bit for a while but now doesn't help so I'll be increasing the dose shortly. Not all wmen get full relief from meds though and I'm positive mine is myofascial in origin so it's no surprise that neuropathic type drugs aren't working great. However, they do for some women.

Secondly don't feel ashamed, this is just another part of the body that's got a problem and needs attention that's all. Plus don't get caught up in the "there's no cure for vulvodynia" stuff you read online, vulvodynia isn't even a condition it's a description of symptoms and doesn't tell us why they are there so it depends what the source of the problem is as to which treatment will work. Drs call it vulvodynia because they are basically lazy and can't be bothered to try and figure out the source of the problem if it isn't a simple infection etc. A good book to read is "When Sex Hurts" by Andrew Goldstein (I think, but it's available on Amazon) as he poo poos vulvodynia as a diagnosis comparing it to if you had a painful knee and they didn't investigate the problem just told you that you had "kneeodynia" you wouldn't accept it so why should we accept vulvodynia as a diagnosis when it's not. The book then runs through the various causes of vulvar pain and discusses treatment options for each one. Don't give up trying to find out the cause.

Thirdly the baking soda baths are if you have too much good bacteria and the hydrogen peroxide is if you don't have enough. Neither are a great idea unless you have been diagnosed with your ph being off or too much lactobacillus which is very rare. Forget them unless they have said Bacterial Vaginosis is present which they routinely test for at a GUM clinic so they would have said after taking swabs.

Have you had anyone check your pelvic floor? That's vital in my opinion. I'm still struggling badly but I have complicating conditions that are holding me back and making it difficult for me to maintain any progress. If you haven't get referred to a Women's Health Physio and don't worry about upping the Ami dose, it can break the pain cycle if it works. Feel free to ask anything or discuss anything, PM me if you need to.
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Medication for Vulvadynia

Post  Kay_star on Sun Sep 18, 2011 8:26 pm

Hey Sarah001

As always your advice is so helpful so thank you! You sound like a very strong women who is just dealing with it. I will discuss with ther GUM dr.

Thanks and take care. I will keep you posted about my progress.
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Re: Aloe Vera Gel

Post  Sarah001 on Mon Sep 19, 2011 5:35 pm

Yes do let us know how you get on. I'm quite used to chronic pain because of my other conditions and I'm stubborn as hell if someone tries to tell me I won't ever improve or they don't know the reason for the pain. Being bull headed determined is the only way to deal with this! Wink
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Re: Aloe Vera Gel

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