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» Will there be an end?
Today at 12:06 am by Krista2828

» you can be healed so easy and quite fast.
Yesterday at 11:46 pm by pussycat

» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 0

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 0

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0


What's next?

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What's next?

Post  sally_jane on Sat Apr 14, 2018 4:28 pm

Hi all. This is my first time posting and I am just desperate for help. I have had vulvadynia since 2002. It took almost eight years before I was properly diagnosed in 2010. I was put on 100 mg daily of amitriptyline; don't use any scented detergent or dryer sheets; wear white cotton underwear when I am able to wear underwear; don't use soap on the vaginal area, etc., etc. etc.). It worked until January 2018, when the pain came back full force. At that time I had returned to working in an office after working at home since 2010. So, one of my thoughts is that maybe it came back because I sit in an office chair all day (although I try to wear dresses as often as possible with no underwear or loose pants with no underwear). Anyway, the pain is constant and unbearable. I burn so bad and am so tender that I am either just plowing through the days or feel like I'm near tears. My husband and I haven't had sex in months due to this. I went to a highly recommended ob-gyn who is very familiar with the condition (thank God! so many doctors misdiagnosed me with yeast for years). So they have put me on gabapentin, an anti-seizure medication. The doctor told me I had a "extremely profound case," Ugh.) It seemed to be working but now I'm back to square one and the pain is horrific. So, the next step is either the Mona Lisa Touch (a laser treatment used in vaginal plastic surgery) or a vesibulectomy. I dread either one, because no insurance covers the Mona Lisa Touch because it's considered cosmetic and is very expensive, and the idea of surgery to remove vaginal tissue is horrifying. I am lost, in terrible pain and was just wondering if anyone has tried the Mona Lisa or had the surgery and can share their experiences. Thanks so much and my prayers to anybody suffering from this terrible, debilitating condition.

sally_jane

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Re: What's next?

Post  amyhp on Fri Apr 20, 2018 10:07 am

Hi, I am so sorry you are suffering in this way. Like you, I have pain all the time and a ton of tenderness. I have heard from multiple doctors that I have a severe case. It’s so hard to hear this.
I have had surgery, but have not done the Mona Lisa. PM me if you want to talk!

amyhp

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Re: What's next?

Post  CatJones on Sun Apr 22, 2018 4:46 am

I'm currently using gabapentin but can only use it once a day as I find it strong. My urugyno plans to try valium suppositoris next. My thoughts are with you both. I know this is so difficult.

CatJones

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What's Next

Post  scrumptuous on Sun Apr 22, 2018 10:17 pm

Hello Sally Jane,

I, as many others of us have suffered with this deliberating condition for coming up to 30 years now and like yourself have tried every possible way of relieving the condition. When I was diagnosed in my thirties, I spent years using creams, visiting various consultants, wearing or not wearing different clothing and on and on and on and I did eventually op for a vulval skin graft, which helped for a short period of time, but I generally believe that was because the nerves had been interfered with initially and it was another consultant, who said that in time all nerve endings regenerate and I did feed this to be true. On a more positive note, I do not feel that any of the attacks I experience now, are as painful or as long and I really do manage to enjoy life. I have been taking gabapentin 700mgs three times a day for quite a number of years now and do find they help and also have had regular injections into the vulval area for pain relief, which also seem to have helped.

One of the things that does seem to make a tremendous difference is the toilet tissue I use and also pads (which unfortunately I now use for slight incontinence), as some of the materials have a high bleach content. I actually mentioned this at the urodynamics clinic and apparently there is a trial being undertaken on the Always pad range, as there have been numerous account of vulval discomfort. It is just a thought, but it may help. I really do feel you need to thing very hard and long with regard to surgery, as it is not always the answer, though we have all felt like just having it taken away and I would definitely try the injections and medication first. With regard to the relationship with your husband, I can so relate to that as well and am aware of how this can have an effect on your own feeling of womanhood, but I used to make my husband appointments and in that way we continued to have a very close, loving relationship, until I was able to resume full sexual intercourse.


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Re: What's next?

Post  annc3333 on Mon Apr 23, 2018 2:17 pm

Have you tried a total elimination diet?  I finally found relieve (going from about a 7 on the pain scale to 1 to 2) by eating nothing but chicken, a little white rice, carrots and ghee for a week.  After about four days my pain was much better. I then added foods back one at a time and found exactly which foods I can't tolerate and those I can.  I have a limited diet now but I can live without medications and a very low level of pain if I stick to it.  I often wish I could just kill the nerve endings in that area but there doesnt' seem to be a good way to do that.  Sooo sorry you are in such a place.  It is a very hard life.

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What's next

Post  jennyk2 on Tue Apr 24, 2018 4:01 pm

You cannot sit on a normal chair all day without a lot of pain. You could tell them you have a bad back and ask them to get you a kneeling/kneeler chair? This will take the pressure off your vulva. Argos have one for £59.99. It might make your back ache sometimes so go back to a normal chair and then go back to the kneeling chair. Really sitting all day is not ideal for those of us who suffer from vulvodynia.
I have also used amytriptyline. It worked well for a while. Now I am on gabapentin and that is working. I take 800mg a day. Try going back on amitriptyline for a while. It might work again, then swap back. Have you tried Lyrica?
I sometimes apply a big blob of vaseline...that helps. I also often use De Vere Aloe Vera Gel. It is really soothing. I don't know how I would manage without it.
Hope this helps


Last edited by jennyk2 on Tue Apr 24, 2018 4:11 pm; edited 1 time in total (Reason for editing : added more detail)

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Re: What's next?

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