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» body stress relief
Yesterday at 10:29 am by Zbrown

» Pretty much cured!
Yesterday at 7:53 am by Mariahopes

» Newly diagnosed
Thu Mar 05, 2015 6:23 pm by drivenbyambition

» relationships/suicidal
Thu Mar 05, 2015 12:15 pm by meelie

» Probiotics
Thu Mar 05, 2015 11:53 am by meelie

» Physical Therapy Tips
Thu Mar 05, 2015 11:49 am by meelie

» I am cured - Lyrica helped!!!
Fri Feb 27, 2015 2:39 am by BpCookie

» Newly Diagnosed, I have been suffering now for 6 months.
Tue Feb 24, 2015 3:20 pm by meelie

» PAIN FREE WITH DR ROBERT MORSE
Tue Feb 24, 2015 8:07 am by Nichlas B.

Newly diagnosed

Tue Mar 03, 2015 10:35 am by drivenbyambition

My story started when I noticed a burning sensation last year. My period was late and I wore a maxi pad in fear of my period starting unexpectedly. I got very irritated and eventually ended up with bacterial vaginosis (that I believe happened due to the maxi pads). When I went for my pelvic exam, I was diagnosed with the previous mentioned condition, but was told treating it would not heal my …

Comments: 2

Physical Therapy Tips

Tue Mar 03, 2015 5:04 am by stsissy

I'm trying to get a physical therapist--I'm pretty sure it will help--but my new insurance is proving to be super complicated and I won't be able to make an appointment for at least another month in all likeliness. Is there anyone whose had some success with PT who can give me some tips on what to do for self massage or stretches. I'd like to start working on it ASAP! Thanks!

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Newly Diagnosed, I have been suffering now for 6 months.

Tue Feb 10, 2015 3:21 pm by OBRN2007sms

I am 45 have recently moved to another state; under a lot of stress because we cannot sell our house and are carrying two mortgages. Three days before I started to have problems with this I went to my orthopedic and had a steroid shot in my hip but something went wrong and the injection went into my sciatica nerve and I and a reaction to the lidicaine I ended up in a wheel chair because I was …

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PAIN FREE WITH DR ROBERT MORSE

Sun Dec 04, 2011 5:19 am by ria

Hello everyone,

I am now pain free no medication. Please look up Dr Robert Morse on youtube he has helped me with my constant pain he is a Naturopathic doctor in America. I did not go and see him I had a telephone consultation, but please feel free to call the clinic advice is there for free can you beleive it Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy Very Happy

If you need any advice please contact me I …

Comments: 82

stop drinking tea and coffee! I cured myself!

Sun Feb 22, 2015 9:21 am by Milla2015a

I would like to tell how I cured myself from this awful condition. Three years ago I had this condition for about 8 months! I suffered a lot! Nothing helped, when they prescribed antidepressants, I fell asleep immediately after the first tablet for 8 hours (daytime), so I never took these tablets any more. One professor looked at the creams that were prescribed and said to me that they make more …

Comments: 1

Newly diagnosed, seriously down right now

Tue Feb 10, 2015 1:49 pm by ndal-trea

Warning: I am going to whine a lot here.
I was diagnosed today with vulvodynia. 45 year old woman with no other health problems. I am living in a new city and went to an MD I was referred to by friends who loved him. He was very nice, but he was so matter of fact about it during the exam "I see nothing there. Does it hurt when I push here? How about there? You have vulvodynia" and then …

Comments: 9

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 …

Comments: 1

honestly no idea what's wrong with me =(

Thu Feb 12, 2015 6:00 am by tiramisu

My butt has been moist and in some pain for maybe a week and a half now. Boyfriend has hemmoroids right now so we figured maybe I did too somehow. But then last Friday my vagina started hurting and has been extremely sore. One day it did hurt to urinate, but not much on the other days. I've been on my period since it started, but I can tell it's also more moist down there than normal. It is …

Comments: 4

scared to take Pregabalin/lyrica

Tue Feb 10, 2015 9:44 pm by Jo44

Hi

Last Friday I was diagnosed by my gynocologist with Vulva Vestibulitus. He's given me 150mg of Pregabalin/lyrica to take, once a day plus Dermovate cream to apply twice a day!
I'm scared to try the meds & would like to hear from anyone whose had success with it please?

Last year I came off Mirtazapine which is been taking for anxiety. It took me from Feb -Oct to wean off it & was …

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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