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» Just Diagnosed with Vulvadynia
Today at 1:57 am by angelique2016

» Vulvadynia
Yesterday at 7:45 am by mary jane

» 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

» anyone from southern california in here?
Tue Jul 18, 2017 2:38 am by crypticcalico

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

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: 3

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


Feeling hopeless

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Feeling hopeless

Post  Delilah1 on Mon May 13, 2013 4:05 pm

Hello Ladies. I'm feeling kind of hopeless today. I visit the forum everyday in hopes of reading someone's story of feeling good again. Does this ever go away? Is there anyone out there who developed secondary vulvodynia and now feels healthy and pain free again? If I ever feel "normal" again I will not forget to come back to this forum and share my story. Thanks for listening!

Delilah1

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Re: Feeling hopeless

Post  Alana3 on Mon May 13, 2013 5:16 pm

I had provoked vestibulodynia and I will tell you that I am considered cured and feeling awesome! It took a while to find the doctor that worked for me, a lot of them thought it was in my head, but it wasn't as you well know. This past October I found a doctor in South Florida that was able to see where the pain was and better yet to show me. He told me I had 3 options and that he wanted to work from cheapest to most expensive. The 3 options were: 1. a compounded cream of amitryptaline, gabapentin and lidocaine (sorry if these are spelled wrong) 2. physical therapy (I was already participating in it) and 3. Surgery known as a vestibulectomy. I tired the first two and they worked for about 6 weeks and than the pain came back. While I was being treated for this he discovered I had strep which I was also treated for with antibiotics (and as far as I know that's gone). After 6 weeks went by, the pain came back I was so depressed because I didn't think I could be cured. Finally, I went back in and he said that I needed to do the surgery. You can imagine how much trepedition I felt when I heard that. I had to schedule it in December because I had stuff to do with work and personal trips that had already been paid for. December 5th was my surgery date you have no idea how bad I flipped out right before, but all I can tell you is that it certainly wasn't as bad as I thought and I am SO HAPPY I did it. The recovery was 6 weeks, and mixed emotions because you feel what feels like vulvodynia, except its just the nerves reknitting it was beyond scary! But at my 6 week mark (actually 2 days before!) he did the dreaded qtip test AND put a finger up in there and there was ABSOLUTELY NO pain!!! I sometimes get a little uncomfortablness on my right side but it's very managable and usually due to muscle spasm. I don't know if you're a candidate for surgery, but the reason I am telling you this is because there IS proof of making a recovery, I am proof of that. Make sure to find a doctor who is well known in vulvodynia. I typed "vulvodynia specailists in South Florida" into google, and my doctors name came up. I am so thankful everyday that I found him beacuse he truly saved my life. Everyday was in pain, my lunch breaks were in the shower, I was depressed and moping and finally found a "cure" or at least no more pain. Take a deep breath and start your search, it takes times and patience, and make sure to go over everything with your doc so that you make sure you are both on the same page. Nothing is more frustrating than when you think you understand something and realize later it wasn't what you really thought. Been there done that ugh! I would say I'm about 98% better Smile I will tell you though that I do work with a dilator (actually my vibrator) and I still see my physical therapist but only every other week now and sometimes I can do every 2 weeks depending, but it was well worth it!

Alana3

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Re: Feeling hopeless

Post  Delilah1 on Mon May 13, 2013 6:06 pm

Thank you for your reply Alana! It's so good to hear a success story! I am so happy that you found relief from this horrible condition. When did your V start? Were you ever able to use tampons, have exams or pain free sex? All this started out of the blue one day for me. Sex, exams and tampons have always been comfortable until now. I do have an appointment with a vulvar specialist at the end of June. It was a 3 month wait for an appointment! I am happy for you! Thank you for sharing your success on this forum!

Delilah1

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Re: Feeling hopeless

Post  Alana3 on Mon May 13, 2013 6:29 pm

Who's your specialist? Yeah, I could have sex comfortably but not exams or tampons, than one day sex got bad and it continued to get bad and NO one could tell me what was wrong, it was horrible Sad Where are you from?

Alana3

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Re: Feeling hopeless

Post  Delilah1 on Tue May 14, 2013 12:13 am

I am from St. Louis, Mo. I'm going to the Vulvar and Vaginal Disorders Specialty Center in St. Louis.
It's been a long wait!

Delilah1

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Re: Feeling hopeless

Post  Alana3 on Tue May 14, 2013 1:19 am

It'll be worth it

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Re: Feeling hopeless

Post  ellie12 on Sat May 18, 2013 4:08 pm

I have found ways of managing my secondary vulvodynia using Lidocaine which is a topical anaesthetic. Ask your specialist about it because after months of using it I was finally able to start having sex with my partner again.

ellie12

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It gets better

Post  Rainy Day on Tue May 21, 2013 8:59 pm

Yes, you will learn how to manage your condition and resume a somewhat 'normal' life. I was a 10 in pain in the first 9 months probably. Once I learned my triggers, what meds work, what therapy works, I am a 1 in pain most days...unless I flare. But, I am learning to control my flares now too. It gets better, but it takes a long time to figure it out!

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Re: Feeling hopeless

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