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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 …

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 …

Comments: 0


100% Pain-Free After 4 Years

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100% Pain-Free After 4 Years

Post  katehiggs on Sat Mar 14, 2015 3:59 pm

Hi ladies! I wanted to share my succuss story with you all. After 4 years of awful pain I was absolutely discouraged and depressed. I had tried estrace, amitriptyline, no sex for 6 weeks, pelvic floor pt, and lidocaine (the only thing that made it possible for my husband and I to have sex) among other things. PT helped a bit by helping my to learn to control my muscles but the source of the pain was still there so it didn't solve the problem. I should add that my pain was primarily provoked not constant, but with sex or a tampon I was instantly in excruciating pain.

Finally in a last ditch effort before surgery I found someone's post online about switching hair/body products for vulvadynia. I decided to give it a try. And guess what? It worked!!!! I am now 100% pain free. It was incredible. I am suspecting that I am allergic to something in shampoo (maybe sodium lautyl sulfate?) because I accidently used regular shampoo the other day and all the pain came roaring back. So maybe you don't have to switch all your products? Who knows. It is important to switch to chemical-free stuff, not just hyper-allergentic. Here is my list!

-Dr. Bronner's castille soap mixed with coconut milk from a can for shampoo (there are probably plenty of actual chemical-free shampoos that you can buy, this just seemed the cheapest)
-apple cider vinegar for conditioner
-Nellie's laundry soda
-Diva cup instead of pads and tampons ( had to use lidocaine during the first cycle but by the second I didn't need it anymore!)
-Dr. Bronners castille soap for body wash
-coconut oil for lube, makeup remover, lotion, and shaving

It was soooo important that my husband switched his products too. Basically anything that comes in contact with my vulva needs to be chemical-free.

I hope this helps someone! Don't give up!


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Re: 100% Pain-Free After 4 Years

Post  katehiggs on Sat Mar 14, 2015 4:06 pm

I should also mention that switching body wash and shampoo/ conditioner was so important because when you shower everything runs downs your body and comes in contact with your vulva. I kept reading things that said "keep shampoo away from the vulva" but this is basically impossible if you are showering. Another option may be to wash your hair separately upside down in a sink or tub so that the products do not run down your body.

I should also mention that I have never had any other signs of an allergy. No dry skin, redness, any thing like that on the rest of my body. No reason to think I would have an allergy. Who would have guessed?

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Re: 100% Pain-Free After 4 Years

Post  mrs.optimistic on Thu May 14, 2015 8:18 pm

What type of soap do you use? What type of shampoo? I use organix and dove sensitive and never noticed difference.

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Re: 100% Pain-Free After 4 Years

Post  mikan92 on Fri May 15, 2015 12:21 pm

Hey Mrs Optimistic!

I also tried Dr Bronner's soap and it didn't work for me. I guess everyone's condition is different so what's working for others might not work for us Sad
I've used aveeno which isn't too bad, or aqueous cream which is a substitute of soap that's not irritating either. But important thing is not get any of those in the bits, even if it's a mild organic soap. and defs no shampoo in that area. basically I'm just using water to rinse and water is the only thing that I will expose that area to (except for coconut oil for lubrication and lidocaine for numbing).
There are few things you can start at home that is helpful in relieving the irritation. You can read up on the post by Sparkle, she gave lots of simple but useful tips!

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Re: 100% Pain-Free After 4 Years

Post  mrs.optimistic on Sat May 16, 2015 8:34 am

So you aren't using any soap down there at all? Just water? Maybe I wash too much! Oh my

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Re: 100% Pain-Free After 4 Years

Post  mikan92 on Sat May 16, 2015 9:59 am

Yup! Just plain water to rinse gently Smile
Many doctors also advice that instead of using all the cleansing products cause vagina has it's own maintenance system so you won't want to disturb that balance!

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Re: 100% Pain-Free After 4 Years

Post  emalita on Tue Mar 29, 2016 7:02 pm

I had never used feminine washes, but when my pain started, I noticed a film that kept building up (not horrible but noticeable). The film had the slightest unpleasant smell to it, and I read this was a mix of natural body oils, skin cells, etc. Anyway, even at this point I was still only using water and my hands (as gently as possible) to try to wash it off, which didn't work even though doctors and the internet say this is all that is needed.

The doctor that I'm working with now, Dr. Fowler, told me this is a huge mistake women with sensitive skin make. He says in his treatment protocol that a soap must be used to "prevent buildup of secretions that act as culture media for bacteria and yeast to be present in higher concentrations than usual." I fought with this direction for a LONG time because everything I had read so far said not to use soap. Well, even though I'm not using the soap he recommended, I did do my research and chose to try a feminine wash called Sliquid (unscented). I was concerned about sensitivity because even coconut oil caused me to burn once! However, this product causes no burning or dryness, and it washed away the film and the smell on the first use. My inner labia is no longer swollen since using the product once a day (no idea why the film would cause swelling, but it did). The things to remember are NOT to overwash, NOT to use it internally, and to BE GENTLE.

So finally a doctor gave me okay advice! I hope to not have to use it every day once my treatments are less frequent.

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Re: 100% Pain-Free After 4 Years

Post  web96 on Sun Jun 26, 2016 5:01 am

I had the same thing! Same cause same cure, and probably the same lady's story.

I use Carina Organics shampoo and conditioner, they're really nice. For soaps I just use natural vegetable oil soaps I get at the health food store. Nellie's All Natural Laundry Soda is good as well.

DO NOT USE Dove or Aveeno, both those helped to cause my reaction ugh curse those "natural" and "sensitive" products. You're looking to avoid sodium laurel sulfate and its derivatives.
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Re: 100% Pain-Free After 4 Years

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