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Treatment Options / Surgery

Mon Jan 26, 2015 10:21 pm by vldicker

I am so happy to have found this forum. I have been suffering with vulvodyina for years…diagnosed when I was 22 and now am 25 but suffered long before the diagnosis. Over the past years it would only flare up for maybe a few days and then wouldn't bother me at all for a long time. My doctor put me on antidepressants and lidocain gel which did nothing to stop the random flare up so I stopped …

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New member looking for self-care and treatment ideas

Fri Jan 16, 2015 3:12 am by Millie

Hello
I am 25 years old and have been suffering from provoked Vulvodynia (Vestibulodynia) for the past year.

About 2 years ago I changed my contraceptive pill from Microgynon to Mercilon because I was experiencing side effects such as nausea and vomiting, however the side effects of Mercilon were much worse and I believe the main cause of all the problems I have experienced over the past two …

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Does anyone else test the ph of their urine?

Sun Jul 22, 2012 1:34 am by Rainy Day

Just wondering if everyone else has acidic urine too? Wondering if that is part of the puzzle? I have a urine ph of 5.75 in the morning and then 6.0 before bed. It never gets close to 7 in morn or at night.

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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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Vulvodynia nerve pain after having baby

Wed Dec 10, 2014 7:33 am by ethome

I recently had my second baby 7 months ago and since then I have had pain at the site where I tore and just inside my vagina. It only really hurt if pressure was applied but I have recently had a steroid and anesthetic injection into the vagina area to help treat this. This has made things so much worse as now I have pain all the time. It throbs and burns constantly. I went back to the gynae who …

Comments: 1

Im a Guy with Issues Similar

Mon Dec 15, 2014 8:17 am by Justin777

Hi girls I recently discovered 'Vulvodynia' last month. How I came across it is ironic. In June of this year 2014 I took a hair loss pill called propecia. Pill designed to stop my hair from falling out. One month in I discovered that my private would struggle to stay turned on. Also orgasm lost feeling. Private has become pretty numb. Very upset over this. They have a website for the few guys who …

Comments: 17

New to vulvodynia and searching for solutions

Sun Dec 07, 2014 11:39 am by justbecca28

Hi,
I am 30 and was just diagnosed with vulvodynia about 6 months ago. Since the first time I had sex, when I was 16, I knew there was something wrong. My bf at the time couldn't even penetrate, and when he finally did, the pain was unbearable. To this day I have never had sex without pain. I didn't even understand that what I was experiencing was not normal until I was probably 20. I thought to …

Comments: 3

Low oxalate diet?

Sun Dec 14, 2014 2:55 am by keepsmiling

I attended a Vulvodynia study day at my local hospital recently and was informed about a low oxalate diet that helps ease vulval pain. Anyone tried and tested this? And does it actually work??

Thanks


Comments: 1

Ipl/lazer hair removal bikin line

Sun Nov 16, 2014 5:58 am by Mary1000

Hiya,

Was wondering if anyone has ever had ipl/lazer hair removal on their bikini line before?

Or if you know if it would effect my vulvadynia.

I'm not in acute stage of it like I was last year. The constant pain stopped from seeing a physio and many other things like coconut oil.also breaking up with my boyfriend so not having sex which caused a lot of emotions as wasn't able too. Still …

Comments: 3


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 

zarli

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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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