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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.

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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 …

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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 …

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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!!!

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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 …

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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 …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2


All knew to me!

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All knew to me!

Post  Guest on Thu Feb 17, 2011 3:45 pm

Sad Hi everyone.

Am knew to the forum and this is all very new to me and by reading other peoples stories, slightly different.

Havent been diagnosed with anything yet, but am very swollen, red and sore.

This all started for me in September of last year when stupidly I left a Tampon in and didnt know about it Embarassed It was in for two weeks and had been pushed right up to the top! Awful. Went to the GUM clinic who found it and pulled it out. Was kept in over night as i felt unwell and very sore and irritated down below. Was given strong anti biotics through a drip to clear up any infection. Still wasnt feeling completely right after a week on anti biotics so went back to the gp who put me on more anti biotics that made me really poorly and ended up back in hospital with fever and pain in my stomach. Was put on yet more anti biotics through a drip even though my blood results showed no infection! Finally they stopped all anti biotics and was told to go home and use just water for the inflamation down below.
Took me a couple of months to recover from the effects of all the anti biotics and was weak for ages and very swollen and sore down below. Couldnt walk sit or wear any under wear. After various steroid ointments, thrush creams, pesseries etc still not much better.
This whole experience has turned my world upside down and i feel very depressed. I have gone from an active 35 year old full of life to being stuck indoors in my pj bottoms. I feel like every time i walk i am making the swelling worse.
I am now under a gynaecologist and a dermatologist and waiting for a vulval clinic appointment in March (which i have waited 4 months for).
The steroid ointments made everything worse. Was perscribed Trimovate by the dermatolgist which i have been using for a week and so far i think it has taken some of the swelling down but can only use it for another 7 days max as it is so strong.
Just cant see a light at the end of the tunnel at the moment and have forgotten what life used to be like. This has taken over my life and bothers me 24/7. Just dread everytime of the month as this irritates me even more.
The doctors have said that one of the anti biotics i was on can give you an allergic reaction like this or the tampon itself being in for so long has irritated everything. Just hope in time it heals itself!
I am glad i have found this website to read everybody elses experiences and share stories.
Am also taking anti allergy tablets.
Sad Sad Sad Sad Sad Sad Sad

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Re: All knew to me!

Post  Sarah001 on Thu Feb 17, 2011 3:51 pm

Hi Joanne, have the doctors made sure you don't have a bacterial imbalance after the tampon incident? I'm assuming they have swabbed and checked for bacterial vaginosis? And cultured a swab and let it grow in the lab to see if it's ok? It wouldn't necessarily show in blood tests if it's an imbalance of the normal bacteria down there. Also get them to check your ph if you can persuade them, if that gets out of whack it can cause alot of problems. If they haven't tried the above things get a bit pushy and make them. Also take plenty of acidophilus to help your body get back on track. It may well sort itself out over time.
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Re: All knew to me!

Post  Guest on Thu Feb 17, 2011 4:00 pm

Hey!

Yes had swabs done about 5 times, whilst in hospital and by the gyni i saw 4 weeks ago. How would they check for ph, Had a swab done for thrush that came back negative. Gyni has said that the inside has all healed up because that was all so swollen too. Just the outside that is taking its time.

Thank you for your advice, so nice to have someone to talk to!


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Re: All knew to me!

Post  naomi on Thu Feb 17, 2011 4:30 pm

hey hun!

well there's a few regular girls on here and we will be here for you. Pick our brains to see if we can work something positive out.

Have they tested you for DIV? Desquimitive Inflammtory vaginitis (excuse the spelling...long day). Google that. I thought it could have been that at first and they tried some treatment for that (i forget the medication but have got it written down somewhere). It helped with the heavy discharge etc.

Also, sounds crap but i used Predfoam at one point (in the liust of diff medications)...its a steriod foam that folk usually use up their bums Smile but i had to up my Lady La-la.

Just it sounds more like infection from ur description. Have they taken biopsies?

Try to keep calm (pot, kettle, black!) and rest up. We're all here for you

Nai xxx
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Re: All knew to me!

Post  Guest on Thu Feb 17, 2011 4:56 pm

Thank you so much for all the information! Will look that up!
So far they have only said its an allergic reaction to the anti biotics, all swabs came back clear.

Have good days where i am really positive and other really dark days when i think i will be like this forever! I get really disapointed when the creams i am given dont work and actually make it worse! I am looking forward to seeing the vulval specialist in March! Think my doctors are sick of the sight of me. Sure they think im loosing my marbles, always cry when im in there!

Has any of the medicines worked for you?

Jo x


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Re: All knew to me!

Post  Sebby (Admin) on Thu Feb 17, 2011 7:36 pm


Hi Joanne and welcome to the forum..i've just said hello to you on our facebook group Smile

I was on antibiotics for years when younger for acne and I reallly do believe that this did contribute to the V as they kill the good bacteria as well as the bad.

Acidolphilis is a great idea, I've started to take it myself

Also cut down on sugars and up your B viatmins..I keep getting low folic acid levels and just recently read that uping this is one of the natural remidies for Vulval irritations

Vulval clinic is deff the way to go, Im going to get refered on Tues...down the drs again, I dont know why they just dont let me move in!

Hope we can help you find a solution and we are all here to virtually hold your hand Smile

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Re: All knew to me!

Post  Guest on Thu Feb 17, 2011 7:46 pm

Thank you so much! Will try everything you have suggested! The antibiotics made me so ill! Took everything out of me! Its so annoying because i didnt need them all anyway! At one point i was on a cocktail of three at a time! Awful! Definitely think this has what has triggered this off in me! Just wish it would boreoff now!

So nice to know that this is here for so many people feeling so alone and depressed in it!

Cant give up hope Very Happy

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Re: All knew to me!

Post  noni on Thu Feb 17, 2011 9:30 pm

Hey Joanne!! Smile

You will get the advice and support u need on here!

Just as many of us have had to self diagnose ....you might need to self medicate, meaning....what some of us have done is actually do the research and bring it to our GPs to get prescriptions...etc etc

Im on Ami now...brought the Vulvodynia survival guide to my GP showed her the page on tricyclics and she wrote up 20 mg a day for me!

We;re all really guinea pigs on here and its a crap shoot!

But...fuck it...you are in good company here!!

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Re: All knew to me!

Post  Guest on Fri Feb 18, 2011 8:19 am

Hi

Are they anti depresents?

Cant beleive how many people live with this! Before this started for me i had never heard of it! If i was ever sore down there or had thrush i would use cream and it would go! Just cant beleive im stuck with it for now!

Thanks for all the info

x

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Re: All knew to me!

Post  noni on Fri Feb 18, 2011 11:55 pm

check out my web site www.livingwithvulvodynia.ca

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Re: All knew to me!

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