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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 …

Comments: 3

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 …

Comments: 5

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 …

Comments: 1

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 …

Comments: 3

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 …

Comments: 6

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 …

Comments: 3

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 …

Comments: 10

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.

Comments: 1

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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Does anyone have this issue?

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Does anyone have this issue?

Post  time2reclaim on Tue Apr 01, 2014 3:17 am

My pain is pretty much external and is stronger in the vestibule. My biggest problem seems to be that the external area does not have normal moisture. About 8 days after my period I do get more of the slicker moisture and for that short time the pain stops but then it begins again.

My pain used to be the entire external, the opening and part of the vagina near the opening. I was using an estrogen for a short time and it at least helped the vaginal pain to improve.

OH and I also seem to have a toilet paper allergy issue now as I get red, inflamed and swollen if I use it. This is pretty miserable. I'm not sure what else to use.

Does anyone else seem to have this dryness issue?


Last edited by time2reclaim on Fri Dec 26, 2014 12:46 am; edited 1 time in total

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Re: Does anyone have this issue?

Post  lonelyone48 on Tue Apr 01, 2014 9:48 am

Hi time2reclaim. Yes I have dryness and was told I was menopausal. It definitely makes vulvodynia worse. I cannot take estrogen so I use KY Jelly.

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Re:Does anyone else have this issue

Post  Sunflower82 on Tue Apr 01, 2014 5:53 pm

Hi,
It maybe worth trying an oil/water based natural lube which doubles up as a moisturiser a good brand that hasn't caused me irritation is called yes! It's a natural product and doesn't contain any horrible chemicals !


Kt

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lubricant

Post  time2reclaim on Tue Apr 01, 2014 10:44 pm

I've been using emu oil and it helps a lot but still doesn't cut the pain

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TP

Post  nanmark3 on Thu Apr 10, 2014 11:03 pm

Hello, the only toilette paper I can use on a regular basis is Charmin Ultra Soft and the oil I use for that painful dryness is organic cold-pressed coconut oil. It's very soothing and doesn't stain things. I hope this helps. Nancy

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Where can you buy organic cold-pressed coconut oil,please?

Post  kks224 on Mon Jun 23, 2014 3:03 am

nanmark3 wrote:Hello, the only toilette paper I can use on a regular basis is Charmin Ultra Soft and the oil I use for that painful dryness is organic cold-pressed coconut oil.  It's very soothing and doesn't stain things.  I hope this helps.  Nancy

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Re: Does anyone have this issue?

Post  kristinewarning@yahoo.com on Sat Aug 02, 2014 3:14 pm

I have the issue with moisture and I am starting menopause. Every doctor I have seen told me "it may sound crazy", but use Crisco oil - yes, the same thick, white lard-looking stuff you would fry chicken in. It's cheap and a can could last for an awful long time. I finally bought some and it works!

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Re: Does anyone have this issue?

Post  time2reclaim on Fri Dec 26, 2014 1:10 am

kristinewarning@yahoo.com wrote:I have the issue with moisture and I am starting menopause.  Every doctor I have seen told me "it may sound crazy", but use Crisco oil - yes, the same thick, white lard-looking stuff you would fry chicken in.  It's cheap and a can could last for an awful long time.  I finally bought some and it works!

I have heard to try Crisco before but haven't yet. Have you had no issues with any sort of vaginal infections if you have sex and are using it? I am so afraid of having to use any meds again on the girly parts.

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Re: Does anyone have this issue?

Post  meelie on Mon Dec 29, 2014 12:14 am

I use a completely natural organic moisturizer called Yes. It is wonderful. It's on amazon but I order it from GB.

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Re: Does anyone have this issue?

Post  time2reclaim on Mon Dec 29, 2014 12:52 am

meelie wrote:I use a completely natural organic moisturizer called Yes. It is wonderful. It's on amazon but I order it from GB.

Do you use the water or oil based product?

I found the ingredients interesting in the water based. There is flax extract which I don't know if it has any hormonal effect as an ointment on the genitalia, I do know there is a possibility of flax being similar to estrogens.

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Re: Does anyone have this issue?

Post  meelie on Mon Dec 29, 2014 2:39 am

I use the water based. I have tried the oil based for those rare sex moments but I still like the water best.

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Re: Does anyone have this issue?

Post  meelie on Mon Dec 29, 2014 2:44 am

I've never read anything about flax having a hormonal effect on anything. I know it is a great anti inflammatory and other things. I give it to my horse for COPD and arthritis. Seems to help so far.

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Re: Does anyone have this issue?

Post  Sparkle on Tue Dec 30, 2014 9:22 pm

The best lube to use is yes water based lube it's non irritant. And most the girls with the horrible condition use it. It's not cheap but I promise u it won't irritate. You can buy it at Amazon online. I always use it

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Re: Does anyone have this issue?

Post  kell on Wed Jun 15, 2016 1:45 am

Can you use the Yes as a moisturizer for inside as opposed to a lube for pre-sex?  I thought I'd read somewhere you could use it either way and it was helpful for dryness.

Also, I recently saw in Hannafords something I thought was interesting -- it was I think, Organic -- Coconut Oil Crisco...  I made a mental check in my head to remember this if I ever needed it.  Currently I melt my coconut oil and apply it externally/internally a bit.  I think it has helped.

I've also made a switch on tp - no perfumes etc...  also washing undies in washer, either with no soap or I've tried a new natural type soap, its called: Molly's Suds...?   link:mollys suds

Has anyone heard of that or think it might be ok?
I also have bought a menopausal vitamin that has black cohosh, Dong quai, wild yams, clover, sage, soy, vitex in it.

I also bought the Key E inserts, which are interesting to say the least -- I think they are good, my big thing is to get the nerve up to approach about having sex at some point soon and see if anything has helped.  Even a little would be good.  I was into my routine of my "therapies" as I call them and then we went camping for 5 days so I wasn't able to do anything then, so now I need to build up my applications and then my courage again...

Sorry to go on here on this thread but I'd love to hear from anyone who has any thoughts on my 'therapies'.   Smile   I've gotten most, if not all of these ideas on this board and I so appreciate it.


Last edited by kell on Wed Jun 15, 2016 10:15 am; edited 1 time in total

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Re: Does anyone have this issue?

Post  PainBlogger on Wed Jun 15, 2016 8:01 am

Yes can definitely be used internally as a moisturiser. It comes in prefilled applicators which can be used for that purpose (or the bigger tubes).

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Re: Does anyone have this issue?

Post  emalita on Wed Jun 15, 2016 1:43 pm

Also, Yes just came out with a vaginal moisturizer that is supposed to be longer lasting than the water based lubricant, but it hasn't been out long enough to have a ton of reviews.

In my opinion, I wouldn't waste the money on the Yes prefilled applicators. I find them difficult to use, and they can leave a lot of product behind in the applicator, which feels like a huge waste to me. I personally just buy disposable applicators and fill them myself. That way I know there is no product waste.

I had used coconut oil in the past and really liked it until it clogged a pore on my inner labia  Rolling Eyes  It was huge and VERY painful (had to have a doctor examine it). However, I had been using it right before bed, and I was wearing a pantyliner so it wouldn't stain my clothes or the bedsheets. So that wasn't a very breathable situation for my skin. I seem to be one of the few women that has to worry about this kind of stuff on my lady bits, but I figured I would throw it out there as something to watch out for.

Below is a good website to check to see how a product rates for things like skin allergies and irritations. They rank things like cosmetics and sunscreens, too, but the below link is for Molly's Suds. Overall it has a good rating, but each individual is different in what can cause irritation. It's interesting to see how horrible a "gentle" laundry detergent can actually rank with all the nasty chemicals they contain. I spent weeks combing through this site, but I ended up deciding to just make my own laundry detergent, which is cheap, easy, and as free of chemicals as I can get while still cleaning clothes  Very Happy

http://www.ewg.org/guides/cleaners/5835-MollysSudsLaundryPowder?formulation=6803

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Re: Does anyone have this issue?

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