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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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Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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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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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

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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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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6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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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 …

Comments: 5


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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