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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 …

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7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

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Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

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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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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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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 …

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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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