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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 …

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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 …

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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 …

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

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: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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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 …

Comments: 22


Q Tip test was not painful /but stil DX with vulvodynia?

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Q Tip test was not painful /but stil DX with vulvodynia?

Post  Castle16 on Thu Apr 21, 2016 9:51 pm

I've been suffering for almost 6 months with burning - started out with frequency/UTI symptoms - so after months of constant burning (always worse with repeated UTI's) I was finally diagnosed a week ago with vulvodynia by they Gyno I went back to who I had initially seen last Dec 2015 - she diagnosed vaginal atrophy at that time - this time the opening to my vagina was very red - thus the vulvodynia diagnosis. However, when she did the Q tip test and probed the area, I did not feel any pain at all. But she still said it was vulvodynia. Every story I've read of this test, the woman all had pain. Has anyone not had pain from the Q tip test and were still diagnosed with vulvodynia. I don't want to distrust my Doctor, but it is strange that I didn't feel pain when it clearly looks very red all over that area and then some, to me. I am finally getting relief from saturated cotton ball of Lidocaine that I sleep with and placed at the entrance to my vagina. I can live for awhile without frozen ice down there now. (even slept with ice pack before) I am stopping aimtriptyline because of the rapid weight gain (posted about that!) as long as lidocaine treatment brought pain level done to a 2-3 after just a few nights on it. Also getting vaginal ring as prescribed by Gyno. (except it's $150 so have to wait a bit for that!) Just wondering anyone else's experience with the Q tip test with no pain? Thank you! Healing thoughts to all Smile

Castle16

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  emalita on Thu Apr 21, 2016 11:49 pm

Vulvodynia is simply chronic vulvar pain without an identifiable cause. The diagnosis just means that you are in pain, and the doctors don't know why. From my research, some women's vulvodynia pain is nerve related, undiagnosed infections, undiagnosed lichen sclerosus or lichen simplex chronicus, undiagnosed inflammatory conditions, pelvic floor muscle dysfunction, etc.

So, in my opinion, even if pain wasn't felt with pressure from a Q-tip, if you have unexplained pain, then you have vulvodynia. My doctor told me it was a diagnosis of elimination. Meaning that if she eliminated everything else, then it was vulvodynia. The pressure from a Q-tip did not cause me pain, but I was still diagnosed with vulvodynia.

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  Castle16 on Fri Apr 22, 2016 12:10 am

Thank you for your reply - yes that makes sense for sure. I just read on a different site about someone who had my symptoms diagnosed vulvodynia but then asked to be treated for candida yeast - even though her cultures all came back negative, as did mine. The yeast can be absorbed into the vagina walls causing the burning apparently - even if there is no itching or discharge.(which I don't have, only burning/irritation) I then just read an article about a doctor saying untreated candida yeast could be the cause of a lot of women's vulvodynia that are not getting relief from treatment - being they need treatment for candida yeast. This woman was treated with Fluclonazole and is now cured and no vulvodynia pain. I will ask my Gynecologist about it but I'm sure she will say no that's not it and not prescribe the med to me - so I will just try to treat it naturally with a candida cleanse - get it wouldn't hurt anything to try it. I'm sure there are topics on here about candida yeast so I will search those too!

Thanks again!

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  emalita on Fri Apr 22, 2016 12:15 am

Have you tried boric acid? That was the only thing that cured my internal burning. I was on 600 mg capsules inserted vaginally every night for 30 days, then twice a week for 2 more months (also using it every night during my period). My doctor originally had it made up at a compounding pharmacy in a fatty base suppository, but I found that the capsules I bought online dissolved better and caused less irritation.

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  Castle16 on Fri Apr 22, 2016 12:24 am

Ive done so much research for 6 months, and in it I would see boric acid but the word acid just freaked me out when I was burning all the time! ha! Okay, I will order some online from vitacost and give it a try. I don't mind living with vulvydnia if I can manage the pain with something and feel normal again down there. I have had to have frozen ice packs on me all the time for all these months. Have had minimal social life unless I was somewhere with a freezer...so depressing! And with my immune system shot from the pain/stress for 6 months I keep getting a re-occurring cold / cough. Sorry to complain, just frustrated, but happy that lidocaine is helping some, but not completely. I will try the boric acid and also do the candida cleanse. I will try anything! Thank you again so much! I really appreciate it...: Very Happy

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  emalita on Fri Apr 22, 2016 12:32 am

No need to be sorry! Venting about this frustrating condition is part of the emotional healing in my opinion Smile

I bought my boric acid capsules from the below website since I had no desire to be creating my own. I truly hope you find relief!

http://www.boricap.com/Boric-Acid-Suppositories1-p/boric-acid-suppositories1.htm

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  Castle16 on Fri Apr 22, 2016 12:47 am

Oh thank you! I'm going to order it now! It says free shipping even Smile Very Happy I will post after a week or so of using it and hopefully you will see my post and fingers crossed for good results! Can I ask one last question...are you completely out of pain now?

Thanks again!

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  emalita on Fri Apr 22, 2016 2:43 am

I'm happy to help in any way I can, and I hope this works for you!

Unfortunately, no, I'm still in pain. However, all of my internal burning, prickling, etc. is gone. Boric acid won't improve flora, except with helping with pH. So for me, I'm left with inflammatory vaginitis, which is not an infection. Basically my good bacteria took a pretty big hit with all the antibiotics I was on. I do have some lactobacillus bacteria, but the count is low. They just haven't been able to thrive, even though my pH is nice and normal/acidic (sometimes that's not enough). So, my specialist has me on an estrogen vaginal tablet to "fuel" the good bacteria and a hydrocortisone suppository to reduce my inflammation. But the boric acid did get rid of whatever infection was there and my internal burning! My pain is now on my vulva.

I would also recommend taking a probiotic orally, or if it doesn't irritate you too much, use it vaginally. I used Fem-Dophilus because it is supposedly proven to have strains that will colonize the vagina when taken orally (not all probiotics are good for the vagina). Below is the link for those too. Some people recommend using them while using boric acid, but I think if you do use it vaginally, wait until you are only using boric acid twice a week or something and on the opposite days of the boric acid.

http://www.jarrow.com/product/391/Fem-Dophilus

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  Castle16 on Fri Apr 22, 2016 7:48 pm

Hi! Thanks for the addt'l info. I'm so sorry you are still struggling in pain - always seems like it's something we have to deal with 'down there'. Guess I took it all for granted for my whole life because I never had so much as a UTI and I just turned 60 years 'young'. I always felt super young for my age, but holy cow this condition past 6 months has slowed me down for sure! Had another good night with the lidocaine cotton ball, so just feels more irritation now that burning most of the day until the evening the burning starts up a bit - until I do the cotton ball treatment again at night time. I know this is not curing me, it's only treating the symptom, so I am researching trying to find a cure!

I wanted to ask you again (sorry!) about the boric acid. You mentioned it helped your internal inflammation..my redness Doc said is at the opening of my vagina - which is the reason I get immediate relief when I put one of my little frozen square ice things against it (can walk around and go places, but the ice melts after about 35 minutes and I need to replace) or any of my cold packs. Do you think the boric acid could still help without the outside inflammation still?

I take 3 probiotics every day and have for quite awhile along with a lot of other vitamins (I will check and make sure I have or get one for the vagina) - but I still got a relapse from a cold that lasted 3 weeks and now it's back again - had only about a 2 week reprieve - so I know my immune system is shot. I have a list of vitamins/supplements specifically for my immune system that I am ordering today.

Thanks for any more info on the boric acid again! I was going to order it but wanted to ask you this question. You seem so knowledgeable and I appreciate your input and suggestions so much.

Have a good day and weekend!
Joanna

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  emalita on Fri Apr 22, 2016 9:37 pm

Ask away! If I can help someone through the hours of research and dozens of treatments I've done, then it won't all have been a waste Wink

I'm honestly not sure how much we actually can feel deep in our vaginas (obviously we can feel things). Most of our nerves are at the vulva if I'm not mistaken, which includes the vaginal entrance. So it makes sense that your pain would be at the entrance even if it's an internal infection. All of my infection pain always felt like it was either at my urethra or right at my opening. I never really felt super deep burning. I had thought I had a really horrible untreatable UTI for the longest time, but it ended up being vaginal discharge irritating my vestibule, which caused me to have frequency, prickling, and burning.

So, if your issue is truly an infection, then I would say boric acid would be a good place to start Smile

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  Castle16 on Fri Apr 22, 2016 9:51 pm

Hi again!

My Gyno didn't call it an infection. She just said vulvodynia and that it was red at the opening. Is vulvodynia considered an infection? I am still so ignorant about it all! (Other things look red to me that I don't think should be that red!) The lidocaine 5% is helpful, but still am having some burning during the day, although slight improvement. (pain scale 3-4) I feel like I should be doing something to cure it and not just treat the symptoms! I just emailed her and asked for some 'cure' options. I am weaning off aimtriptyline after 15 lb weight gain and I am not eating that much! Besides, after more then 2 months it didn't help the burning at all. Maybe just using lidocaine just buys it time to heal or something. I made the mistake of putting on some lidocaine 2% cream that I had and OMG burned SO bad! I had to jump in the tub to get it off me. I had tried that before and had that kind of burning but for some reason thought I could use it during the day a little to save the 5% ointment for nighttime being the 5% ointment worked now and didn't burn (except for first few minutes). They must be completely different things!

So back to the boric acid - okay I am going to try it and order the suppositories now then! Scared it will burn..but I will hold my breath!

Thank you so much again!!

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  emalita on Fri Apr 22, 2016 10:50 pm

Well, vulvodynia simply means vulvar pain without a known cause. For some women that does mean it's an infection that hasn't been diagnosed for some reason. A lot of women do feel it is a chronic yeast/candida infection, but everyone's situation varies. Vulvodynia pain may not have anything to do with an infection for some women (true vulvodynia shouldn't)...some have overactive or damaged nerves, for example.

My pain has changed over the last two years unfortunately. Mine did start as an undiagnosed infection of some sort, and boric acid did get rid of that for me.

True vulvodynia should NOT be an active infection, but I've found a lot of tests done at a regular OBGYN office miss things. Or the doctors don't know exactly what test or lab to order. A pretty good book that walks through all sorts of down there lady issues is The V Book by Elizabeth Stewart. She goes into detail on how yeast cultures need to be taken using a special medium in order to diagnose the infection in some cases and how a woman sometimes needs to not have used any yeast treatments for weeks to get accurate results. I may not personally agree with everything she says, but it's the best resource I've had through all this. I wish she was in my state and insurance network! I would see her in a heartbeat!

Also, just in case someone is upset by me saying "true" vulvodynia, I mean no disrespect and am not diminishing the suffering of those who are struggling with a possible undiagnosed infection. However, the National Vulvodynia Association states vulvodynia is not caused by an ACTIVE infection. So, I just wanted to make sure I wasn't making up my own rules by saying vulvodynia could be caused by an undiagnosed infection Wink

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  Castle16 on Fri Apr 22, 2016 11:49 pm

Me again! Could you tell me how I could private message you on this site? If that would be okay? I'd like to keep in touch on this journey!

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Re: Q Tip test was not painful /but stil DX with vulvodynia?

Post  emalita on Sat Apr 23, 2016 12:23 am

Absolutely! Off to the right hand side of my replies to you under my username, join date, and location there is a little box that says "PM". Just click on that and voila!

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