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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

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New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

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Has Anyone Tried Evening Primrose Oil?

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Has Anyone Tried Evening Primrose Oil?

Post  Minny on Tue Nov 05, 2013 3:42 pm

Hi everyone,

I am a new member, and would like to share some info. with everyone. I have been suffering on and off for 30 years with Vulvodynia. I was treated in my early twenties, after having many UTI's and infections from constant use of antibiotics. A Gyn. froze the painful areas with liquid nitrogen, and the pain went away completely for many years. The doctor is not practicing anymore and I cannot find anyone who will do this procedure. The freezing procedure worked for over twenty five years with only minor bouts of burning.

I am now in my early fifties and about four years ago, the horrible pain came back. I am peri-menapausal, and cannot relieve myself from this constant burning, even using Estrace cream. I have been to many specialists and have tried many treatments. I just found this website today and am very happy I did.

If anyone has tried Evening Primrose oil and it has relieved the burning, please let me know. I am desperate, like all of you suffering constantly, to rid myself of this burning pain. Thank you so much, Minny.

Minny

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Re: Has Anyone Tried Evening Primrose Oil?

Post  zarli on Wed Nov 06, 2013 1:45 am

Hi Minny
I heard years ago when I was on a different forum about a lady who used vinegar and water, she put a folded face cloth in the mixture and then doused her self with it. Funny enough my Mum used to do this to my head when I used to get migraines, they used this for pain in the old days. The vinegar draws out the heat.... I don't suffer from burning down there so I have never tried it, but I couldn't see any problem with giving it ago. I feel you should look into going to a vulva pain specialist if you can. All the best Very Happy 

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Re: Has Anyone Tried Evening Primrose Oil?

Post  Kathy100 on Wed Nov 06, 2013 12:03 pm

Be careful with vinegar - it's acidic. I'm very wary of using anything down there following several flare ups. Notriptyline tablets and physio are helping me but it's a long haul. Have you tried lindocaine - I know that's helped some ladies here.

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Re: Has Anyone Tried Evening Primrose Oil?

Post  Sarah001 on Thu Nov 07, 2013 10:08 pm

I second Kathy vinegar could be seriously painful! Shocked  I use lavender oil in vaseline and it helps alot. Anything should be used with caution though, do a tiny spot test first
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Re: Has Anyone Tried Evening Primrose Oil?

Post  Elc88 on Sun Nov 10, 2013 1:36 pm

I've tried it. It wasn't right for me, but that doesn't mean you shouldn't give it a go. If you're pre-menopausal, a lot of people recommend it for hot flushes too, so it sounds like a good idea for you.

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Re: Has Anyone Tried Evening Primrose Oil?

Post  Courtney 32 on Sat Nov 23, 2013 8:21 pm

I posted this is another topic but thought you may be interested in reading .....

Hi ladies, I wanted to tell you what has helped my 22 year old daughter. My daughter has been battling vulvodynia, chronic UTI's, yeast infections, BV, and even strep B vaginal infections for almost 3 years now. She's been on the neverending revolving doOr of antibiotics, vaginal creams, lidocaine, hydrogen peroxide douches, etc., etc. FINALLY I SAID ENOUGH IS ENOUGH AND TOOK OVER!! There's nothing worst than seeing your child in so much pain and agony, and it was so heartbreaking watching this "animal" take my daughter's womanhood away from her. SUPER SAD!! Sad

Here's what I did and, shockingly, it has helped her tremendously. Even to the point where she and her fiance' are actually having sexual intercourse with very little to no pain.

1. Get off all HORMONAL birth control.
2. Get on a daily regiment of:

Morning:

Garlic pill - 1
Vitamin C (500mg) - 1
Femdophilus - 1
Cranberry pill - 1
Biotin - (she takes this because her hair has been thinning)
* Barlean's, The Essential Woman Supplement, Swirl, Chocolate Mint - 1 TBSP
* Flaxseed Oil - 1 .... once the Barlean's, The Essential Woman Supplement, Swirl, Chocolate Mint drink is gone. The two main ingredient's in this drink is Flaxseed Oil and Primrose Oil.


Evening:

Folic Acid - 1
Jarrow IBS 299V Probiotic - 1
Femdophilus - 1
Cranberry pill - 1
Biotin - (again, she takes this because her hair has been thinning)
* Primrose Oil - 1 .... once the Barlean's, The Essential Woman Supplement, Swirl, Chocolate Mint drink is gone. The two main ingredient's in this drink is *Flaxseed Oil and *Primrose Oil.

She also uses a spray bottle to spray that area with a mixture of vinegar and water while taking her daily shower.

About 2 weeks after starting this regiment, I'm telling you, it's been like night and day for her. She is so happy right now. Almost makes me want to cry. And btw, she had a copper IUD with NO HORMONES inserted for birth control.

Also, we will be adding Zinc (and copper ... needed with zinc supplementals) to her daily regiment. I found some very interesting articles that say that low zinc levels are often found in people who have acne and hair loss/thinning due to their hormones being out of whack, "PARTICULARLY IN LOW PROGESTERONE LEVELS," which, voila', is often noted in women with vulvodynia.

Anyway, I just wanted share what has dramatically helped my daughter with this awful, AWFUL thing. I don't know if her daily regiment will help all, but even if it helps 1 or 2 people, that's a couple less women that have to live with this evil problem.

GOOD LUCK TO YOU ALL!!

Courtney 32

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Re: Has Anyone Tried Evening Primrose Oil?

Post  zarli on Sat Nov 23, 2013 9:51 pm

Thankyou Courtney for your post, Im going to give it a go. My hair is thinning too. A lot of these things to take that you mention Ive never heard of so I guess Ill go to health food shop to start. Glad you mention vinegar and water I don't feel bad for my earlier post !!! Thanks again and all the best for your daughter, I have a 19 year old daughter and if she had Vulvodynia Id be going crazy with worry as well.

zarli

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Re: Has Anyone Tried Evening Primrose Oil?

Post  Alana3 on Sat Nov 23, 2013 9:58 pm

Im glad shes.feeling better but please dont tell people to get off bcps you have absolutely no idea why someone is on something. And telling someone to get off drugs could.potentially hurt them. I'm on it for endometriosis my growths would grow out of hand without the help of bcps. None of this would work for me as mine was nerve pain. Mine was handled thru surgery and removal of my skin and nerves. That for me was never an option and sorta seems like yeast or an infection. But I appreciate what you're saying and helping other women but try not saying to get off of something.

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Re: Has Anyone Tried Evening Primrose Oil?

Post  Courtney 32 on Sun Nov 24, 2013 7:10 pm

Alana3 wrote:Im glad shes.feeling better but please dont tell people to get off bcps you have absolutely no idea why someone is on something. And telling someone to get off drugs could.potentially hurt them. I'm on it for endometriosis my growths would grow out of hand without the help of bcps. None of this would work for me as mine was nerve pain. Mine was handled thru surgery and removal of my skin and nerves. That for me was never an option and sorta seems like yeast or an infection. But I appreciate what you're saying and helping other women but try not saying to get off of something.

Alana3, I'm sorry.  The only reason I said to get off hormonal BC is because it's strongly suggested (and do I dare say, universally KNOWN) by many that vulvodynia is actual caused by or strongly contributed by hormonal BC use.  Obviously if you have other illnesses where hormonal BC is needed, then you may need to find differing ways/regiments to help with the vulvodynia.  Like I said, my daughter's daily regiment isn't for everyone and may not help everyone, but if it helps just a few women, it's worth sharing.

Also, my daughter did have yeast and other chronic infections, but she was diagnosed with vulvodynia about 2 months ago.  The doctor even admitted that she had probably been misdiagnosed with "infections" for a couple years.  They even discussed having surgery to remove the nerves, and also the possibility of trying local injections.  Even though she was in unbearable pain, my daughter was super leery and scared about having injections or surgery down there, so she opted to give her daily regiment of probiotics, vitamins, and sprays a chance.  She actually started feeling a bit better after 2 weeks and, thankfully, stuck with the regiment.  She'll be the first to tell you that she had her doubts about "the regiment" but, I know, now after 1 1/2 months of sticking with it and feeling 98% "normal" again, she would encourage everyone to find a daily regiment THAT'S GOOD FOR YOU and STICK WITH IT.  Give it a chance to work.  Also, I want to add, she didn't get her IUD until about 1 week ago, about 3 weeks after she was feeling some improvement in her vulvodynia.

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Re: Has Anyone Tried Evening Primrose Oil?

Post  Alana3 on Sun Nov 24, 2013 7:19 pm

I am in total agreement but I have been blamed for my v because I use bc

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Re: Has Anyone Tried Evening Primrose Oil?

Post  Alana3 on Sun Nov 24, 2013 7:22 pm

And like I said I'm happy for her too

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Re: Has Anyone Tried Evening Primrose Oil?

Post  bluekangeroo on Mon Nov 25, 2013 11:58 am

This always worries me when people say BC pills can cause the v pain.

My gyne has just suggested I go back on BC progesterone only after I have been off it for about 5 years.

I used to use combined BC pills for about 10 years, my v pain began probably about 3/4 years after I started taking the pill, but it was manageable you know like 5 days outta 30 I would have some pain. (It all started after a run of infections and yeast down there) But since coming off the BC pills the pain has gotten so much worse like 25 days out of 30 I'm in terrible burning sore pain.

There are bound to be several other factors at play here, but it seems to me that going back on the pill is worth a try. Especially as my pain is always better at the start of my period and worse towards the end of my period and just after. Seems there is something cyclical going on.

It certainly hasn't helped me much coming off.

And like Alana - my pain is nerve related so I can't imagine how or why the BC pill will make a difference but lets see.

I'm always confused at all the conflicting advice, for example, my pain is said to be just my nerves playing up, but nobody will recommend surgery or even a nerve block to give me some relief.

A

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Re: Has Anyone Tried Evening Primrose Oil?

Post  Alana3 on Mon Nov 25, 2013 12:26 pm

I seriously doubt it's just bc lots of women get v never have touched bc. It's just something else to blame you know. If it caused it why when we go off doesn't thr pain stop? There's absolutely no evidence just speculation. But everyone is different mine cant come back thank god but unless I wanted surgery every other month I have to be on bcps. But that being said if you had any weird unbalance or change with hormones wouldn't it stand to reason that vulvodynia could rear its ugly head? So maybe if it is to blame someone could be on the wrong pill who knows

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Re: Has Anyone Tried Evening Primrose Oil?

Post  uniqueblacksheep on Tue Nov 26, 2013 6:28 pm

I actually just started the Evening Primrose oil about a week ago and as you know it's hard to know in such a short time, but I do feel it might be helping. I will update in a few weeks as to how it's going. I am doing this with the combination of rinsing during urination to dilute my urine and also rinsing after. I no longer use toilet paper after urination, I only rinse, unless I am not at home. I am also using Acid Redux, so it's hard to tell which is helping the most, but the EP oil does seem to calm and lubricate which I think is a big help.

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Re: Has Anyone Tried Evening Primrose Oil?

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