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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


Vulvodynia is ruining my life

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Vulvodynia is ruining my life

Post  amy124 on Tue Aug 16, 2016 2:33 pm

Hi everyone. I've read through a bunch of your stories and I am so glad I found this forum. I've felt so isolated in my issues but it's reassuring to find a group of people who seem to be experiencing something similar to what I have been experiencing...although I would never wish this on you all because it sucks.

I'm 18 years old and I've been struggling with all sorts of bladder/vaginal issues for about a year. Experienced no pain, sensitivity, or any issues and had painless sex for about a year before all these issues started. I started getting urinary pain and soreness every month around my period and after sex. I went to numerous doctors who all told me I had UTIs and treated me with antibiotics (I tried cipro, bacterium, nitrofurantoin, macrobid, etc.) ...I was treated 8 or 9 times within 6 months. All these courses of antibiotics gave me yeast infections (of course) so I was also treated for those too. I finally went to a new doctor with yet another UTI. She did a urine culture and told me I didn't have a UTI this whole time and she wasn't sure what was causing the pain. She gave me antibiotics anyways and, like all the previous times, the symptoms went away for the most part. However, since I began treatment for all the UTIs, the burning pain when I pee has not completely gone away. It is bearable and I can live with it but it's definitely annoying. I feel like I'm not really emptying my bladder all the way. My symptoms seemed to, for the most part, go away for a month or two (minus the burning when I pee). The past 3 months however have been awful as a whole new set of issues have emerged. Now, I have intense burning in my vulva area that randomly happens for days at a time then goes away for days or even a week or two. It usually happens closer to my period. Sometimes so painful I can't walk or it wakes me up at night. It feels raw and on fire and it burns to pee but definitely doesn't feel like a UTI. It seems to be an external skin issue as I don't have much burning inside my vagina. I have visited 4 doctors who tested me for all sorts of STDs, yeast infections, UTIs, bacterial vaginosis, did pelvic exams and told me they can't find anything wrong. I changed my clothing detergent, I drink more water, I wear cotton underwear and avoid tight clothing, I use vaseline on the area, I try to limit processed food and sugars, I don't drink caffeinated drinks, but nothing seems to be helping. I am in a relationship and I have pretty much stopped having sex entirely because I am terrified that it will cause more pain (also, my boyfriend got tested for STDs too and came back clean). I'm only 18 and its so frustrating that I am already losing my desire to have sex at all due to all these stupid issues. All my doctors told me this is just something I will have to live with. I feel like I'm going crazy because no one believes me since all my tests come back negative and physically I look fine. I was so relieved when I found this forum because all the problems described here are exactly what I'm experiencing. So glad Im not alone in all these issues.

amy124

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Re: Vulvodynia is ruining my life

Post  emalita on Tue Aug 16, 2016 4:11 pm

Hi amy124,

I'm so sorry you're having to go through all this.

You had a lot of antibiotics and yeast medications in a short period of time. My issue was caused by being over prescribed antibiotics for what I thought was a UTI that wouldn't go away. I had a confirmed UTI that was cured during one of the initial rounds of antibiotics, but the pain continued because the antibiotics destroyed my healthy flora. Your flora can be out of balance without you having an actual infection, and your vulvar skin can be super irritated from any yeast creams used as well as any excess discharge that you may have had from your flora being out of whack.

If you think you have a UTI in the future, I would suggest looking into having some D-Mannose on hand to see if that will get rid of it without antibiotics. Do a google search and do some research on it. It has a lot of good information supporting its use for UTIs.

For your flora, you could try some probiotics meant for vaginal health to see if it helps improve things. Unfortunately, for me, they did nothing (test confirmed they didn't increase my good bacteria), and I've found that it just took a lot of time to get things to calm down once I stopped throwing product after product at it.

How long has it been since you've used any medication or product vaginally? When was your last round of antibiotics?

emalita

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Re: Vulvodynia is ruining my life

Post  PainBlogger on Tue Aug 16, 2016 4:44 pm

Just because the doctors can't see anything wrong and tests show up negative for things doesn't mean your pain is not 100% genuine. And it doesn't mean you'll have to live with this forever. If you haven't already then I'd recommend a referral to a pain management specialist. Gynaecologists/dermatologists/urologists are not always great at treating chronic pain when they can't find an obvious cause to treat. Pain specialists are experts in medication for chronic pain. Physiotherapy/PT may also help you.

You can read my story here: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

I've had a lot of urinary issues. I still can't empty my bladder properly (it empties fully but it fits and starts rather than one continuous flow). But I'm heaps better than I was. It can take time to find the optimum treatment regimen (and often it's a combination of things needed) but don't lose hope. The best general advice I can give you is to be stubborn. It can be hard when you're in pain and your energy is sapped, but people do get better from this.

PainBlogger

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Re: Vulvodynia is ruining my life

Post  WaahwaahUK on Wed Aug 17, 2016 12:39 pm

I echo the sentiments already expressed here. Personally I ended up in awful pain I feel partly from being over prescribed creams like steroids and thrush treatments when my GP didn't know what was actually wrong. I would say now be cautious what you use there whilst you are in pain, and perhaps look to more specialist help. Don't give up. If possible get a physiotherapist who specialises in women's health to assess you. There are so many causes and contributory factors to this kind of pain. As PainBlogger said, be stubborn. In the meanwhile I'm sure you can see from other posts, that keeping things natural and keeping irritants away from that area as much as possible will help. You're not alone.

WaahwaahUK

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Re: Vulvodynia is ruining my life

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