Log in

I forgot my password

Latest topics
» Counting down and feeling overly anxious
Today at 7:32 am by zarli

» New here, diagnosed 2 years ago
Today at 7:13 am by zarli

» One month of mostly pain free.....
Today at 7:06 am by zarli

» here's hoping!
Today at 7:04 am by zarli

» Feels like there's a lot of pressure down there... Help? En
Today at 6:20 am by morgaan_xo

» leg and thigh pains
Tue Jul 29, 2014 4:24 am by 2muchpain

» Pelvic Floor therapy and At-Home finger and hand therapty on Vagina and anus
Sun Jul 27, 2014 11:11 pm by Lucylou48

» Healing is possible
Sun Jul 27, 2014 9:51 pm by Cured patient

» Vestibulectomy
Sun Jul 27, 2014 4:52 pm by Alana3

New here, diagnosed 2 years ago

Wed Jul 30, 2014 9:17 pm by mythreesons

I'm Teri from Alberta, Canada. I was diagnosed with Vulvodynia 2 years ago after 2 months of terrible burning pain that doctors could find no reason for. I started taking Elavil (30 mg per day) and Vagifem 2 times/week. That kept symptoms mostly under control for almost 2 full years. About 6 weeks ago, I started my first major flare-up for reasons unknown and can't seem to get it under …

Comments: 1

My Story...in desperate need of help

Mon Jul 07, 2014 11:45 pm by sailor_moon

Hi ladies,

I joined this forum out of desperation in hope that someone may be able to offer advice. I am also here to offer support to others, because lets face it, noone really knows how this issue affects your life and makes you feel until you experience it first hand. HELL is the only word to describe it.

I'm an Australian girl in her mid 20's.

A little over a year ago I developed an …

Comments: 15

Traumeel injections or Botox?

Mon Jul 21, 2014 2:14 am by Kris282

Has anybody has success with either of these? Or perhaps nerve blocks?

Comments: 0

How do I get added to the secret Facebook page?

Wed Jun 18, 2014 3:32 pm by Caropes

How do I get added to the secret Facebook page?

Comments: 4

hi all new possible diagnosis of vulvodynia

Wed Jul 16, 2014 7:27 pm by princesst124

I just went to my GYN nurse and she believes I have nerve pain and she wants me to see a vulva specialist. I am B R O K E! We live in the US , have insurance through my husband's work but it's minimal. The last time I had female pain it was constant cramps and they said I had a weak lower pelvic floor. I went to a female physical therapist.  The out of pocket expense was over $700! I knew I most …

Comments: 12

New here and trying to find more girls that live in Brisbane or Australia

Mon Apr 01, 2013 7:05 am by keepdreaming

Hi All,

I am new here and I would really like to get in contact with people from Brisbane, Australia.

I was recently diagnosis (2 months ago) with Provoked Vestibulodynia (Vulvar Vestibulitis) and reactive vaginismus due to the Vestibulodynia, after such a long time of massive pain, suffering and feeling completely hopeless.

I just want to start by saying that this forum have helped me SO …

Comments: 5

New and confused :( opinions needed please

Fri Jul 11, 2014 6:52 pm by quixotic

Hello, i'm very confused and upset and looking for some opinions on what could be going on with me, I will try to keep it brief...

Problem started January after two courses of antibiotics - suspected Thrush, no swab taken at time due to how swollen/painful area was, felt and looked very red/inflammed and aggravated inside, alot of discharge, thick white/yellow coloured, multipe doses of …

Comments: 4

Please help

Wed Jul 09, 2014 8:01 pm by noelle2530

Hello ladies I have yet to be diagnosed I have been to many doctors plan on going back in a couple weeks I have been tracking my symptoms daily I was hoping someone could tell me if it sounds like what they have experienced. I would appreciate any help I could get I am desperate for answers...

05/12: felt fine
05/13: burning
05/14: Some slite burning kinda irritated feeling,
05/15 burning …

Comments: 9

New,Depressed and need help!!!!!

Sat Jun 21, 2014 10:04 pm by bvnh13

Hi everyone, this all started for me about five months ago, and I am 42. I had sex with a new partner and a few days later I was red inflammed and on fire down there. Went to the DR did cultures and it came back as yeast, gave me diflucan and got better but not fully. I then got bronchitis and got a RX for Zythromax and after that and my period the same symptoms game back.I got two doses of …

Comments: 4

Has Anyone Tried Evening Primrose Oil?

View previous topic View next topic Go down

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

Posts: 1
Join date: 2013-11-05
Location: Boston, MA, USA

View user profile

Back to top Go down

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

Posts: 164
Join date: 2013-08-11
Location: Australia

View user profile

Back to top Go down

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.

Kathy100

Posts: 95
Join date: 2012-12-17

View user profile

Back to top Go down

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

Sarah001

Posts: 1159
Join date: 2010-06-11
Age: 41
Location: UK

View user profile

Back to top Go down

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.

Elc88

Posts: 55
Join date: 2013-07-20

View user profile

Back to top Go down

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

Posts: 3
Join date: 2013-11-23

View user profile

Back to top Go down

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

Posts: 164
Join date: 2013-08-11
Location: Australia

View user profile

Back to top Go down

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.

Alana3

Posts: 1016
Join date: 2012-09-25

View user profile

Back to top Go down

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.

Courtney 32

Posts: 3
Join date: 2013-11-23

View user profile

Back to top Go down

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

Alana3

Posts: 1016
Join date: 2012-09-25

View user profile

Back to top Go down

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

Alana3

Posts: 1016
Join date: 2012-09-25

View user profile

Back to top Go down

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

bluekangeroo

Posts: 44
Join date: 2012-05-17

View user profile

Back to top Go down

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

Alana3

Posts: 1016
Join date: 2012-09-25

View user profile

Back to top Go down

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.

uniqueblacksheep

Posts: 4
Join date: 2013-11-21

View user profile

Back to top Go down

View previous topic View next topic Back to top

- Similar topics

Permissions in this forum:
You cannot reply to topics in this forum