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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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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 …

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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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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 …

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COCONUT OIL cured me.

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COCONUT OIL cured me.

Post  britneyb93 on Thu May 24, 2012 12:58 am

for the past week I have been ingesting 2 tablespoons of coconut oil.

by 3 PM day 1 I was pain free.

I was the girl in class crying and running out of the classroom because I could not sit down on those stupid plastic chairs for longer then 15 minutes.

I could not have sex, no tampons, no tight clothes, no underwear, no baths, no contact to my privates at all.

I am pain free. PLEASE go buy coconut oil I got mine at the Vitamin Shoppe in Manhattan Beach Nutiva brand under $12.

I tried Zmax, rephresh, vagisil, all types of washes, lidocaine, aloe vera, ice, pelvic floor muscles, chiropractor.

Everyone is different, but this worked for me, I had to share since I have been visiting this site for months getting tips and advice.


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Re: COCONUT OIL cured me.

Post  Chelsea1991 on Fri May 25, 2012 6:59 am

Hi, I was wondering what type of coconut oil did you use?

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Thank you!

Post  karris87 on Thu Jul 26, 2012 4:50 am

After reading your post, I went out and bought some coconut oil pills at Vitamin World, and I take about three of the gel pills a day. It has really improved my pain with urination. Not 100%, but like 75%. Thanks so much for posting about it!

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Re: COCONUT OIL cured me.

Post  Gizzy on Mon Oct 01, 2012 4:01 pm

With the Coconut oil,how many times a day and how much do you take it? Very Happy
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Symptoms?

Post  katie220 on Mon Oct 01, 2012 6:33 pm

I want to try that. I have a sensitive stomach though. Does it give you any stomach issues when you take it? Thanks for the advice btw.

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Re: COCONUT OIL cured me.

Post  Aussie on Tue Oct 02, 2012 4:39 am

I use coconut oil as lubricant. I would be interested to learn how long have you been pain free from using this method?

I have not tried eating the stuff but find it helps greatly with yeast issues when I use it as lubricant Smile

Thanks,

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Coconut oil

Post  Char29 on Fri Oct 05, 2012 1:30 am

Hi there
I was just wondering - you said you use coconut oil and it has helped - did you ingest it or use it as a lubricant?
I have had this issue my whole life - and things are really getting to a head in my marriage; I have tried everything!!! I am really desperate!!
I look forward to your answer in anticipation and will be going to buy some ASAP!!!
I really hope to have the same result as yourself!! Crying or Very sad

I have just found this site - out of pure desperation!!!! I am tired of living like this and have no idea what to do!!
Thanks
Charmaine xx

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Re: COCONUT OIL cured me.

Post  britneyb93 on Mon Nov 05, 2012 10:49 pm

I incorporated it into my diet,

Used it as an oil in my vegetable stir frys, mixed 2 tablespoons in cranberry juice, spread it on toast with butter. And yes ingest it with food or it will make you nauseous!

It can be used as a lubricant. I should also add that I used it for about 3 weeks and then I stopped, no symptoms since 10 days ago and I have been ingesting it everyday and I'm pain free again.

I have probably ingested 2-3 tablespoons a day when I take it.

That's about it guys.

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Re: COCONUT OIL cured me.

Post  Ceriane on Tue Nov 06, 2012 8:05 pm

Bought myself some coconut oil and I'm going to try it!!!

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Re: COCONUT OIL cured me.

Post  tamtam on Sat Dec 22, 2012 3:40 am

I am going to try it. I am now using a compound it does help but does not get better. I just joined this group so glad I can talk to woman about the same issues. Thanks so much!

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any cocnut updates

Post  sherunsandknits on Thu Jan 17, 2013 3:00 am

Just wondering from everyone who was going to try it - any positive results?

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Coconut Oil

Post  hojolly on Sun Jan 20, 2013 9:57 pm

I'm shooting the moon and going for the coconut treament. No sex in 11 years because of this condition. My husband is a saint! Finger & toes crossed. Exclamation

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Re: COCONUT OIL cured me.

Post  dmilly01 on Mon Mar 25, 2013 4:20 pm

I use coconut oil to soothe my vulva every day and if very bad, I use it with lidocaine so doesnt burn as much as lidocaine can sting for few mins when first applying it. But i havent ingested coconut oil, So i will have to give it a go. I get mine from Tescos in the UK. It is pure organic coconut oil and it says on it that you can use it as a spread. I keep mine in a cupboard as goes hard in fridge. Probably because it is an oilx

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Re: COCONUT OIL cured me.

Post  catchme on Mon May 20, 2013 11:01 am

Wow, this is quite surprising! But I'm gonna try it too, it's worth a shot. I wonder what it is in it that could ease the pain by eating it. Thanks for the tip! Smile And really happy for you that you found some real help!

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Re: COCONUT OIL cured me.

Post  Alana3 on Mon May 20, 2013 12:36 pm

Just saying be very careful with that. If you ingest it it has.a ton of calories and makes you break out. If you put it down there it can cause bacterial infections and yeast. I asked my doctor he said maybe but sometimes it can cause more problems in the long run. If you use it everyday. I've heard of people using it with success so it's worth it but it can cause worse problems so just.be.very careful Smile

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Re: COCONUT OIL cured me.

Post  catchme on Mon May 20, 2013 4:41 pm

Alana3 wrote:Just saying be very careful with that. If you ingest it it has.a ton of calories and makes you break out. If you put it down there it can cause bacterial infections and yeast. I asked my doctor he said maybe but sometimes it can cause more problems in the long run. If you use it everyday. I've heard of people using it with success so it's worth it but it can cause worse problems so just.be.very careful Smile

that's why living with this illness is so difficult. there's so many different things that has helped different people that you don't know where to start, don't know what you dare to try 100 % and so on. It feels like trying different things but not full on hasn't gotten me anywhere. Shocked

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Re: COCONUT OIL cured me.

Post  Alana3 on Mon May 20, 2013 6:50 pm

We'll oils aren't good to put there they trap bacteria. I did surgery it worked for me but I was sick of experimenting

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Re: COCONUT OIL cured me.

Post  catchme on Mon May 20, 2013 8:18 pm

Alana3 wrote:We'll oils aren't good to put there they trap bacteria. I did surgery it worked for me but I was sick of experimenting

I think using some kind of oil is really important for most of us and most doctors recommend it too. It helps me at least. And I've also done surgery (2 months ago) but it's not gonna help for my generalized symptoms even though the vestibulum area is almost pain free now. But sex is still impossible and I get pain inside only by gently using dilators. Plus unprovoked pain on a daily basis Neutral

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Re: COCONUT OIL cured me.

Post  Sarah001 on Mon May 20, 2013 8:46 pm

Funnily enough when I use my dilators I use oil, it does make things feel better for me and water based lubricants were the ones responsible for my many UTIs while I used them so it's a case of what works for one may not work for another I suppose. I tried coconut oil however and that made matters worse but a little bit of vaseline with a drop of lavender oil is very soothing for me.
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Re: COCONUT OIL cured me.

Post  Alana3 on Tue May 21, 2013 2:45 am

Just saying what I was told and what worked for me. I may have something different than u girls too if you have generalized it probably would be soothing. I just didn't want to mess with any chance of bacteria. But I had provoked v so it's a different beast

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Re: COCONUT OIL cured me.

Post  catchme on Tue May 21, 2013 6:24 am

yeah, we are all different and react differently to different things. And some may have had a lot of issues with different infections and maybe then it's not so smart to use oil. So I get your point Alana Smile But those who haven't had those problems and for whom the vagina feels dry it's usually good to use some kind of oil. I use Weleda Organic Calendula Oil and I've found that it does help with the burning and rawness. Plus when you apply the oil you get used to touching and for some that has also alleviated the pain

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Re: COCONUT OIL cured me.

Post  yoginimom on Tue Oct 28, 2014 2:47 am

My gyno recommended cocnut oil, and said to use it as a lube as all the over the counter ones can give me V flare ups. Coconut oil is the only moisturiser or lube that doesn't give me a flare so far. But i'm open to trying others. Would replens and such also be in the same risk category for BV and/or yeast?


Last edited by yoginimom on Mon Nov 17, 2014 6:04 am; edited 1 time in total

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Re: COCONUT OIL cured me.

Post  Alana3 on Tue Oct 28, 2014 7:12 pm

I got off the pill and i no longer get BV or yeast. Maybe it is hormone levels for you? But I refuse to ever get back on the pill ugh! If coconut oil works for you have at it. Very Happy

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Re: COCONUT OIL cured me.

Post  JulesB on Sun Jan 18, 2015 7:36 pm

Before I use anything in my cag I fully research it. Coconut oil has anti bacterial and anti fungal properties and doesn't go rancid. As a result of this it is a good deterrent against candida (although you may need to combine it with a low sugar and low yeast diet). Other oils that can be soothing, such as olive oil, and encourage bacterial growth, but not coconut oil, in fact it is a powerful destroyer of all kinds of microbes, from viruses to bacteria to protozoa. It also has anti irritant and anti inflammatory properties. Around 50 percent of the fat in coconut oil is lauric acid, which is rarely found in nature. In fact, coconut oil contains the most lauric acid of any substance on Earth. Your body converts lauric acid into monolaurin, a monoglyceride that can actually destroy lipid-coated viruses such as HIV and herpes, influenza, measles, gram-negative bacteria, and protozoa such as giardia lamblia. Yes, it is a fat but Coconut oil is comprised of medium chain fatty acids (MCFAs) that are easily digested and readily cross cell membranes. MCFAs are immediately converted by your liver into energy rather than being stored as fat.

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Re: COCONUT OIL cured me.

Post  JulesB on Sun Jan 18, 2015 7:39 pm

I meant vag!

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Re: COCONUT OIL cured me.

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