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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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New Member Need Advise!

Sun Nov 27, 2016 6:51 am by Julie326

Hi!

I have been suffering with Vulvodynia since 2013 when I was 21. Had previously not had any problems down there other then the occasional yeast infection. It started in 2012 when I was put on Beyaz birth control. After a couple months on bc, I got a kidney/bladder infection that lasted for 5 months. First one in my life! Was placed on Bactrim (didn't work) and Cipro numerous times. My …

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Has anyone tried Reflexology as a treatment

Wed Nov 30, 2016 8:54 pm by Roselilyflower

Hi there everyone, I was diagnosed with vulvodynia about 5 months ago. It all started as an allergic reaction to some thrush cream I used to treat a yeast infection which I got agter a heafty load of antibiotics. I have been tested umteen times for herpes etc and I am all clear which is reassuring but still depressing as Inwas not sure what the hell was going on, then finally I was given an …

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How to deal at work

Sat Oct 29, 2016 12:21 am by fran

Hi everyone,

I am a 29-year old from the UK and have recently been diagnosed with Vulvodynia. I have just spent hours reading through the forum and feel reassured that I am doing the right things to address it. My symptoms have become so bad that I had to get signed off work and I have been at home for nearly 2 weeks now. At the moment, I just can't imagine sitting at a desk all day and being …

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My almost 4 year old was diagnosed today

Mon Aug 01, 2016 11:50 am by HazelsMum

Hello

This morning my daughter was diagnosed with Vulvodynia. She has been suffering pain since she was 18months and it has taken over two years to get referred to a paediatrician who diagnosed her.

Her symptoms have been intense pain, normally at night. Now she is older she can tell us about it and she says she feels like her 'front bottom's is on fire. She is SO SO distressed when happens. …

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Pain all the time

Mon Oct 03, 2016 4:39 pm by Susiejane

I have had vulvodynia for about a year and I have pain when something touches it when I pee and sex is a no go really feeling depressed about it tried some anti depressants and creams no good then had predendial nerve blocks almost 3 weeks ago and has anyone had them could someone please tell me how long they can take to work abit about me I was physically and emotionally abused since I was 7 and …

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Does anyone else have experience with this doctor?

Sat Oct 01, 2016 7:37 pm by Pavloviandoggy

I have been suffering from vestibulodynia for two years, though I have definitely had episodes of vulvar pain throughout my life. I also had a three month episode of vulvar pain four years ago following a severe UTI. My sister also has vulvodynia (though unlike me, she can have pain free sex most of the time). We both have PCOS, which makes me think our problems are due to a lack of estrogen. In …

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Does anyone else have experience with this doctor?

Sat Oct 01, 2016 7:37 pm by Pavloviandoggy

I have been suffering from vestibulodynia for two years, though I have definitely had episodes of vulvar pain throughout my life. I also had a three month episode of vulvar pain four years ago following a severe UTI. My sister also has vulvodynia (though unlike me, she can have pain free sex most of the time). We both have PCOS, which makes me think our problems are due to a lack of estrogen. In …

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Diagnosed and Humiliated

Thu Sep 15, 2016 4:19 pm by Valkywrite

When I was with my boyfriend a few months ago, we decided to eventually try to have sex (both virgins, believe it or not). I'm 25, and it was my first attempt (grew up in a super religious family--I've been gradually moving away from that), so I decided to go to a gynecologist to get a check up and get on birth control.

I've never found tampons comfortable or possible to wear, so I've always …

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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 

zarli

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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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