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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, …

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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 …

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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: 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

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: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


Vulvodynia?

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Vulvodynia?

Post  Casscass09 on Fri May 20, 2016 2:34 pm

Hello,
This is gonna be a long story, sorry. So more than a year ago when I first became sexually active I gotta uti, and bacterial vaginitis. I got the uti to go away. But it took many courses of antibiotics the bv to go away. When it finally went away, I was still left with a symptom and that was it burning while I was peeling. After seeing my urologist many times she told me she thinks it's borderline IC. I never got any tests done for that because at the time she gave me pyridum to help with the burning. And for some reason after taking that my symptoms went away. Fast forward about 2 months and I'm still symptom free with the burning. But then I try to have sex again and it triggers my painful urination. But I noticed even before seeing a urologist for IC I had pain while having sex. It's hard to explain but when I'm having sex it feels like the walls of my vagina are being like scraped. They hurt. I don't know if that made sense but yeah. When I went to the gynecologist she took a look around and she told me the muscles of the opening of my vagina were very vey tight. And that made me think maybe it was pelvic floor dysfunction. But now that I'm looking up symptoms it's seems like it could be vulvoadyna. It hurt even when she swabbed the inside with a q-tip. The only time I hurt is when something is in my vagina. I sometimes get really itchy around the opening of my vagina. But that's like once every week. Maybe even less. Does anyone think it could be vulvoadyna? I've also got some weird discharge going one and I've gotten many tests done and have come back negative. I'm thinking that the antibiotics ruined all the good bacteria down there and that's what caused all this.

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RE; Vulvodynia

Post  Antaea on Fri May 20, 2016 4:56 pm

Welcome Casscass09 and thanks for sharing your story.
What you're telling, let me think of provoked V or vestibulitis. This would not exclude the diagnosis you've got. Hope, you'll soon find out. Maybe you ask your gyn whether that could be a possibility.
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Re: Vulvodynia?

Post  emalita on Fri May 20, 2016 5:00 pm

I'm sure the ladies on this forum are going to get sick of me writing this, but I want to make sure women understand what a vulvodynia diagnosis means. I really wish someone would have told me this earlier on so I knew there was hope for relief regardless of all the dismissive doctors I saw throwing around a vague vulvodynia diagnosis.

Vulvodynia isn't a single disease/condition for everyone. Vulvodynia is a diagnosis based off of elimination of other conditions (e.g. yeast, BV, STDs, etc.), and when a doctor cannot find a cause for the pain, they may diagnose vulvodynia, which is simply chronic vulvar pain without a known cause. Basically they are telling you that you're in pain, but they don't know why. Some women have a nerve issue, some have pelvic floor dysfunction, some have undiagnosed inflammatory conditions, some have unidentified soap/detergent reactions, etc..

Personally for me, all of my tests came back normal until I went to a vulvovaginal specialist who treats women with only certain types of vulvar pain. He diagnosed me with a very bad case of inflammatory vaginitis (IV not DIV) - if you are interested in what my test results showed to result in this diagnosis, let me know as I am happy to share them. My inflammation is not caused by an infection but is left over from too many antibiotics and multiple irritating treatments after an infection (a longer version of my story is linked in my signature). My issue is not nerve related or caused by unresolved sexual issues as the other vulvar specialists I've seen have insisted.

The only reason I'm telling you all this is to hopefully give you encouragement to keep searching for answers, and in my opinion, being told I had vulvodynia wasn't good enough for me since it didn't tell me what was actually wrong (just the opposite really - just a fancy medical term for an unexplained pain). Below are some suggestions and probing questions to hopefully head you in the right direction (some are obvious, but I have to include them just in case):

- Eliminate all chemicals that are coming into contact with your vulva. This includes: flushable or feminine wipes (they are the devil in wipe form), shampoo (my OBGYN has me washing my hair in the sink - he says it only takes a single drop in the shower to set off a reaction), laundry detergent (I make my own, but my OBGYN recommends All Free & Clear or Cheer Free & Gentle), shaving cream (my OBGYN recommends Vanicream Shaving Cream), super soft or scented toilet paper (lots of chemicals go into making super plush TP), not 100% cotton tampons/pads (I use a UK brand of organic 100% cotton tampons called TOTM - ordered from Amazon), douches, etc.

- If you are having sex, your partner MUST use hypoallergenic products also. Afterall, your partner's skin is coming into contact with you. So any chemical residues on their skin can rub off on you. It can take weeks to months for your skin to calm down. So give this a fair shot before writing it off.

- Did your doctor tell you what your vaginal pH is, or do you monitor it yourself? A higher pH doesn't necessarily mean an infection, but it could be a sign of low good bacteria, especially since you were on antibiotics. For me, my lactobacillus count is low (even though my PH is normal), and probiotics and pH balancing products were not enough to restore healthy flora.

- You mentioned you have discharge. Does it have a color or smell? Does your pain seem worse when it comes into contact with your vulva? Does it stick to your skin or ruin your underwear?

I hope this helps you a little to get to the bottom of your pain! As a wonderful lady on this forum (PainBlogger) once said "'Chronic' does not necessarily mean 'permanent'...Stubbornness pays with this condition. Be stubborn and don't give up hope."

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RE; Vulvodynia

Post  Antaea on Fri May 20, 2016 5:13 pm

This is very important information which should be repeatet from time to time.
THANK YOU.
But personal, the diagnosis "vulvodynia" did not parrot something I already had guessed. It opens up to a special treatment which is not possible without. I mean drugs like Lyrica and other medication for neuropathic pain, even this is only one type of vulvodynia.
Another thought: Women who are pre-og postmenopausal, should think of measuring their estrogen-levels. Often too low levels and atrophy of the skin may cause generalized vulvodynia in women after the menopause. Topical estrogen may also be helpful for women suffring from provoked vestibulitis.
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Re: Vulvodynia?

Post  emalita on Fri May 20, 2016 5:25 pm

You are absolutely correct Smile If the pain is truly nerve related, a diagnosis of vulvodynia will open up other treatment options with drugs like anticonvulsants and antidepressants.

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Re: Vulvodynia?

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