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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 …

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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


New to Group, scared and depressed

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New to Group, scared and depressed

Post  Coldchris on Thu Jun 09, 2011 6:29 pm

Hi Everyone:

So glad to have found this site. This is my story. I had an UTI. After UTI, yeast infection, treated by diflucan, cream and OTC monistat. Did not get better. Many trips to dr. Treated shabbily. Went to Seattle (I live in Alaska) to a specialist who said I had a hyperimmune response to the yeast and had swelling and inflammation. Got some cream to use 2xs a day for 6 weeks to help get it in check. Mid way through, got an absessed tooth and had to go back on antibiotics (still on them). Had antibiotics (pro biotics to balance them), vicodin, advil, tooth numbing injections, etc. Urine was like acid I bet and really irriated the heck out of inflammed vestibule. Sitz baths and keep on the cream. Started using domeboro sitz baths but I think this may be trying out the rest of my skin. (Has anyone tried Aveeno?) I am struggling with this and feels like it just keeps coming. I'm scared, depressed and feel very alone. Go back to specialist next Wednesday. Did anyone else feel so overwhelmed and depressed?

Coldchris

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Forgot to Add

Post  Coldchris on Thu Jun 09, 2011 6:33 pm

Pain is in my vestibule. Was like razors, but the sitz baths seem to be helping, but seem to be itching on lips now. I'm about to have my period, does anyone else have flare ups around this time?

Coldchris

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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Thu Jun 09, 2011 7:29 pm


Welcome to the forum and hope you feel you can let out your feelings on here

I was recommended Aveeno by the Vulval dermotologist..am gonna deff try it. Got a huge bottle. She said that it helps to moisturise the area and get the vulvar used to touch and calm the nerve endings down.

Myself and if not every member has at some point felt extremley low and depressed. I didnt want to go on anymore. It is also a very isolating condition which is why I set up the forum in the first place. I'm sure if we all had sore and painful arms or legs we would feel more able to talk about it with others but because it is our sexual organ it feels so taboo to talk about!

Your not alone with us and if you wish we also have a secret facebook group you can join. Posts do not appear on your profile or newsfeed

Let us know how the steriod cream goes and try anything you feel may help you. A lot of this is trial and error and wading through tons of creams, meds etc until we can find the right combination.

Do not give up...I am managing better than ever now. Am on 300mg pregabalin and biofeedback as mine is most deff due to an unstable pelvic floor. I have even managed to start having sex again..so remember we can get better




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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Thu Jun 09, 2011 7:33 pm


Oh forgot to mention..I deff get flare ups just before my period and then around the middle to the end. This is very common in women with V. I think it is a combination of the hormones, womb cramps (im sure they gotta effect the pelvic floor) and the pads/tampons we have to use.

I use the softest pads I can find. The Always silk or Boots cottons seem to work best.

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Re: New to Group, scared and depressed

Post  Sarah001 on Thu Jun 09, 2011 7:36 pm

Yep the antibiotics, yeast treatment, UTI all sound alot like how some of us started with this. I for one got to the point where I didn't know how to go on with this pretty quickly but found learning alot about the subject helped. Read books such as Amy Stein Heal Pelvic Pain or When Sex Hurts and you'll soon see you're far from alone in this. Definitely get your pelvic floor checked too, I've been doing something recently to my tight pelvic floor that helps quite a bit so like Sebby I'm in the hypertonic pelvic floor group.

And Sebby, holy moly you're having sex now? Fantastic! If I get to that stage I'm wondering where I'll find someone to actually have sex with! Laughing
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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Thu Jun 09, 2011 7:47 pm


Yeah, I found a fella! ...really dunno how I did that! Well actually we were flirting at work and I drunk texted him one evening and it all went from there lol

We only had sex a few times but I am managing to relax more and more. I still havent got hold of the new biofeedback sensor. Havent got back to Dr Glazer yet to say it not turned up yet.. yeah its naughty of me..the boyfriend kind of distracted me!

I did tell him I get pain etc and explained I couldnt always have sex etc...he dont seem to mind anyway and he like the kindest man I have ever met!

cheers


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Re: New to Group, scared and depressed

Post  gem123 on Thu Jun 09, 2011 8:16 pm

hi i have just got back from a appt with a dermotologist and she has also said the same to me about thrush so i will be starting of a 3 mth treatment soon, i know how you feel i have been really down the last few weeks but i am feeling a bit more positive i have just ordered the aveeno oatmeal satchets to try i will let you know what there like, i just wanted to say you are not alone and thinking about you

gem xx

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I think we have all been there

Post  annaCA on Thu Jun 09, 2011 8:56 pm

I think we have all felt depressed, lonely, and fear that the pain will get worst. I know I felt it this past week as on top of v, I got a possible uti and have cramps from my period. I definitely get worst right before my period and right after. It is pretty exhausting going to all the doctor appointments and trying out new medication and dealing with the side effects. This board has definitely helped me even just by reading other people's posts and knowing I am not alone in this and that although we each have a different story, we have a lot of similarities. It was really helpful for me knowing I wasn't a freak and that more people than you think have this condition. I am trying to take each day as it comes which I feel is harder than it sounds. Hope you are feeling better!

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Re: New to Group, scared and depressed

Post  Coldchris on Thu Jun 09, 2011 9:51 pm

This just feels like hell mentally and physically. It has knocked me for a loop. It's just too much. I am normally happy and outgoing, but this is making my life miserable. I work full time, have a five year old son (very best thing), a supportive husband, but how much more can I do here? I'm trying things, following doctor's orders, and I'm just feel beaten.

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Re: New to Group, scared and depressed

Post  Coldchris on Fri Jun 10, 2011 12:30 am

Would love to join facebook group, sebby! Love it.

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Re: New to Group, scared and depressed

Post  Sebby (Admin) on Fri Jun 10, 2011 7:25 am


I have inboxed you with details regarding the facebook group Smile

Take one day at a time, sometimes thats all we can do and know that when we get the real bad flare ups it will calm down..Im on my period at the moment and OUCH! I cant use the softer pads at the moment as I am real heavy and these big old pads are rubbing! Shocked

In the meantime we can at least support each other and have an outlet for our feelings knowing that others know exactly how you feel Smile




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It's ok!

Post  Louise on Tue Jun 14, 2011 10:57 pm

We are all here for you & yes your story sounds a lot like how mine started! You are not alone I can totally relate to how you feel ! x x x

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Re: New to Group, scared and depressed

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