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» Looking to meet up in LA/OC CA
Yesterday at 3:43 am by crypticcalico

» Vulvadynia
Mon Jul 24, 2017 11:35 pm by Linda Williams

» Just Diagnosed with Vulvadynia
Mon Jul 24, 2017 1:57 am by angelique2016

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV

Vulvadynia

Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

Comments: 4

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

Comments: 7

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: 21

Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

Comments: 1

Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

Comments: 0

anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

Comments: 6

Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12


just diagnosed and scared

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just diagnosed and scared

Post  whiteroses117 on Fri Aug 23, 2013 9:30 pm

Hi everyone,

My name was Kim, I was just recently diagnosed with vulvodynia. I've been also living with IC and IBS, but the vulvodynia is the worst. I have unprovoked V, and it currently hurts so much. I am laying here with ice, and it is helping a bit, but it will just go back to hurting after I have to pee again. This flare came out of nowhere- just went to the bathroom and it burned ever since. Sex is usually painful- I can rarely have sex with my boyfriend without wanting it to stop. I have listed what I'm using for all my disorders down below. I would love to talk to people who are going through this too; I have been very depressed and very scared and I don't know if I'll ever find relief. I would love to hear any success stories.

Thank you all for listening!

-Amitriptyline: 10 mg a night- hasn't helped yet
-Estrace: vaginal cream used 2/3 times a week- just messy and it burns when it comes out
-Neogyn: I started this about two weeks ago and it still burns when I put it on. Says it takes about 6-8 weeks to work, so I'm trying to be patient.
-Aloe pills: Unfortunately, these make me very nauseous. I need to be more regular with them, but I dead taking them.
-IC diet: I try to stick as close to it as I possibly can
-Imodium: I have bad IBS symptoms so I often need to take Imodium.

I hope to hear from you soon <3 -Kim

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Re: just diagnosed and scared

Post  KJ on Sat Aug 24, 2013 3:26 am

Hi Kim,
I know how you feel...it is such a painful and lonely disease. There are a lot of success stories on this site and new treatment ideas. I wish I could share a success story, but unfortunately I'm in your same boat. My doctor just tried a round of botox injections....I am in day 11 and still waiting for relief...I pray it works.
Glad you found us....you aren't alone anymore!

KJ

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Re: just diagnosed and scared

Post  Sarah001 on Sat Aug 24, 2013 1:38 pm

Hi Kim,
I just wanted to say the dose of Ami you're on is very low, what they usually do with that one is increase the dosage by 10mg a week until 50mg and then see if it's helping at all. If it isn't they would then probably give either Gabapentin or Lyrica so it might be worth asking about increasing the dose to begin with. I'd also read "When Sex Hurts" and see if you can establish why the problem has occurred so you know better how to treat it. it's a really good book and covers all the known possible causes which is incredibly helpful when trying to put together a treatment plan. I know for practically everyone on here it seemed to arrive out of nowhere but often there are some other signs and symptoms before the V that can lead you in the right direction. For example alot of the ladies with tight pelvic floors had symptoms such as having to push urine out, constipation, back pain etc or those with hormonal issues have skipped periods or had just started a different birth control pill. It's a good idea to read up either in that book or online about causes and see what you can come up with.

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your not alone

Post  zarli on Sat Aug 24, 2013 2:14 pm

Hi Kim
Your not alone, since joining this forum I have felt so much better, just reading the positive comments is wonderful. There is always hope and new things to try. I agree with every thing Sarah said to you. And thank you Sarah you seem to answer every one with such positive remarks and it really makes a difference, you are appreciated. I am a true believer in that "Nothing ever stays the same", as much as you can be in pain one day you can have relief the next day. Up the amitriptyline Kim under guidance with your Doctor, I went up to 35mg and my pain went over night and that lasted for 4 years. Under Sarah advise Im trying to find the source of the pain now and I will never give up!!

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Re: just diagnosed and scared

Post  Sarah001 on Sat Aug 24, 2013 9:33 pm

Aww bless you zarli and keep trying to find that cause and eliminate it! I think proactive is the only way with health problems and the more clued up you get about it the better choices you make. Good luck girls! Very Happy 
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Thank you

Post  whiteroses117 on Mon Aug 26, 2013 8:15 pm

Thank you all for responding. I wish you all the best of luck. It means a lot to me to talk to people who are in my shoes. I'm going back to the doctor in a few weeks; hopefully he will up my dosage of Amitriptyline. Neogyn has been been burning, so I don't know if I should continue with it.

I am having a very bad flare for the last couple of days. I don't know if it's an actual flare or a yeast infection, just because it is so bad. I'm swollen, red, itchy, and it burns like crazy. I can't even wipe without it hurting. My urine has been burning it as well. Is this a flare? How long do flares last? I'm so new to all of this.

Again, thank you all for responding. I am very scared, and your responses really do help.

<3 Kim

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go to doctor

Post  zarli on Mon Aug 26, 2013 9:10 pm

Kim you need to see your doctor NOW not in a few weeks, your ami needs to go up now so it can help get rid of your symptoms and control the pain. When pain is controlled your symptoms will be relieved I believe. Try to not think bad things don't be scared there is help you just need to get to the doctors

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also...

Post  zarli on Mon Aug 26, 2013 10:25 pm

also you should try BEPANTHEN ointment it is a nappy rash cream you will find it in your supermarket in the baby aisle it acts like a barrier and it is soothing, it will help stop your wee from stinging, and while your there try Johnsons baby soap in the baby aisle, its the only soap I can use. I hope this helps you.

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zarli

Post  whiteroses117 on Mon Aug 26, 2013 10:52 pm

I called and I'm going in next week. I'm hoping he ups the dosage. Have you ever confused a flare with a yeast infection? I can't even have pants on (or anything touching the area) today. Thank god I have off today!

Also, thank you for the soap tip!! I use Aveeno soap- doesn't burn me. I'll try Johnson's though- may be even better!

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good news

Post  zarli on Tue Aug 27, 2013 11:10 am

Glad you got into your doctor tell him you have researched medication and 35 mg is what works be assertive with dr I always find it helps even though I get intimidated being assertive but its worth it!! I have had lots of flare ups and yes I used to get them checked for yeast infection which always proved negative!! Please let me know how you get on and don't forget to try the cream if you haven't already kindest regards Zarli

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Re: just diagnosed and scared

Post  Sebby (Admin) on Thu Aug 29, 2013 4:05 pm

Welcome to the forum, as you can see you are definitely not alone. We are all in or all have been where you are now. I am on lyrica and had to research that myself and ask for it! I am also doing pelvic floor training (trying a new routine)
Don't give up, things can and will improve. It's about finding the right treatment for you x
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how are you going?

Post  zarli on Tue Sep 10, 2013 8:59 am

Hi Kim just wondering how you are going? Hope you have had some relief.

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Re: just diagnosed and scared

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