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» Vestibulectomy today and no pain
Today at 3:28 pm by Dsrt16

» vestibulectomy success
Yesterday at 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:06 am by Jgreen81

» Pain aftee vestibulectimy
Yesterday at 12:03 am by Jgreen81

» Freaking out because I don't think surgery worked HELP!!!!
Yesterday at 12:01 am by Jgreen81

» Vulvodynia help
Wed Nov 15, 2017 1:04 pm by ekaterina1996

» FACEBOOK VULVODYNIA SUPPORT GROUP (SECRET)
Tue Nov 14, 2017 9:53 pm by Dsrt16

» Needing some reassurance
Sun Nov 12, 2017 3:04 pm by Nicmay

» Vulvodynia burning mouth and bladder discomfort
Fri Nov 10, 2017 7:26 pm by Zbrown

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 0

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

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: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7


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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