Vulvodynia Support
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» Hope to all my suffering ladies
Aloe Vera Gel EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Aloe Vera Gel EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Aloe Vera Gel EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Aloe Vera Gel EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Aloe Vera Gel EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Aloe Vera Gel EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Aloe Vera Gel EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
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» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Aloe Vera Gel EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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.

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Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

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An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

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I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

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New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

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Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

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New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

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Aloe Vera Gel

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Post  Sarah001 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?
Sarah001
Sarah001

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Post  mmorgan 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.
mmorgan
mmorgan

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Post  Sarah001 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!!
Sarah001
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Aloe Vera Gel Empty Deasert Harvest Aloe

Post  Aussie 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.

Aussie

Posts : 230
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Age : 35
Location : Queensland, Australia

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Post  Sarah001 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.
Sarah001
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Post  Kay_star 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

Kay_star

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Join date : 2011-07-28
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Post  Kay_star 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.

Kay_star

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Post  Sarah001 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.
Sarah001
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Post  Kay_star 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.
Smile

Kay_star

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Post  Sarah001 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
Sarah001
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