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» HELP! Going for my first GYN visit
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» Not sure what's wrong with me, but....
Yesterday at 7:15 pm by haybay

» Cured from vulvodynia - I've been pain free for over a year... please read
Sat Mar 28, 2015 8:40 am by JstMrried

» Need Feedback: Young Living Essential Oils
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» How I cured my Provoked Vestibulodynia
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HELP! Going for my first GYN visit

Wed Apr 01, 2015 7:25 am by stewie

Hi,

I just joined the forum today and I wanted to ask people who have been through this for a while if there is anything specific I should ask about or request during my office visit? I have 100% vulvodynia symptoms. I've had them for 5 months and its painful and depressing. I've read a lot of blogs and every time I learn a little more but it seems like different things work for different …

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Not sure what's wrong with me, but....

Tue Mar 31, 2015 7:15 pm by haybay

I'm so glad to have found a group of women experiencing similar symptoms! My symptoms have been progressing for at least five years now. I'm 27 years old, and I'm finding that I'm becoming more and more insecure and depressed as a result of my symptoms, as well as the uncertainty of any diagnosis. Some suggestions have been made by three doctors, but no one has been able to "cure" me or …

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New Member Here - I have VVS

Fri Mar 27, 2015 12:59 pm by srslyskwrrly

Hey everyone,

I am so glad to find a supportive online forum for those of us with Vulvodynia! I was diagnosed with Vulvar Vestibulitis about 14 years ago and back then there just wasn't much information to be found about Vulvodynia issues. Today I am glad to see more medical research is being devoted to it and far more information is available online. Moreover, it is a comfort to now be able …

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THERE IS HOPE I OVERCAME VULVODYNIA - IT WENT AWAY

Sat Mar 21, 2015 2:48 am by mtaylor18

Since 2009 I had suffered with terrible UTI's, kidney infections, cystitis, recurrent thrush and lots of gynecological and urological problems I became very depressed. December 2012 I had chronic pain in my vulva (AGAIN) but this time it felt different, it was there around a month and just didn't go away! I went to hospital and had an ultrasound where they saw two burst ovarian cysts. I thought …

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Just found this site.. thank god.

Sat Dec 27, 2014 1:59 pm by abbey5531

Hi everyone-
I have been struggling with my diagnosis of vulvodynia since February of this year, but problems have been going on for a long time. I was on the pill after I lost my virginity due to a pregnancy scare when I was about to turn 19, which was over two years ago now, and since then I have experienced pain while having sex. My boyfriend at the time and I ended up breaking up, and I …

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Any advise would be great!

Mon Mar 09, 2015 10:51 pm by gsygrl8

Hello, I will keep this short and sweet, I have been suffering with vulvodnyia for 6 years now and was diagnosed 2 1/2 years ago. I have possibly tried everything to ease the pain even been to London to have nerve injections(I cant remember the proper name for the procedure) which worked for a few months the first time but did not work at all the second!I have done special diets, worn certain …

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Pudendal neuralgia

Fri Mar 13, 2015 10:10 am by Mariek

I have been reading about this! Can anyone else relate to this? Do they go hand and hand? I'm confused?


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Diagnosed last week

Tue Mar 10, 2015 6:27 am by Mariek

I just found out last Wednesday that I have vulvodynia. It affects everything in that area! . I had stopped taking my anti depressants last year and was doing really well, now I feel like I am on the down slope again. I have been crying daily since I found out. Hope this passes. Dealing with depression anxiety and everybody else's comments when you try to talk to them about it. I'm so glad to …

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miserable for years

Fri Feb 20, 2015 5:00 am by cdrocab

I've ridden and shown horses for years and for the last 18 years carried Lidocaine cream in my saddle bags They say if you suffer from Vulvodynia stop riding horses and bikes. I no longer ride motorcycles but still try to bicycle and if armed, am able to ride the trails on my horse for about 2 hours. I had to find a home for my ungaited horse since the bouncing made it worse. No jeans allowed so …

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Has Anyone Tried Evening Primrose Oil?

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Has Anyone Tried Evening Primrose Oil?

Post  Minny on Wed Nov 06, 2013 2:42 am

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 12:45 pm

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 11:03 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 Fri Nov 08, 2013 9:08 am

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 Mon Nov 11, 2013 12:36 am

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 Sun Nov 24, 2013 7:21 am

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 Sun Nov 24, 2013 8:51 am

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 Sun Nov 24, 2013 8:58 am

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 Mon Nov 25, 2013 6:10 am

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 Mon Nov 25, 2013 6:19 am

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 Mon Nov 25, 2013 6:22 am

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 10:58 pm

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 11:26 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 Wed Nov 27, 2013 5:28 am

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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