Log in

I forgot my password

Latest topics
» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 1

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4


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

Go down

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

Posts : 10
Join date : 2016-04-16

View user profile

Back to top Go down

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.

emalita

Posts : 217
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

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!

Castle16

Posts : 10
Join date : 2016-04-16

View user profile

Back to top Go down

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.

emalita

Posts : 217
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

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

Castle16

Posts : 10
Join date : 2016-04-16

View user profile

Back to top Go down

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

emalita

Posts : 217
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

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!

Castle16

Posts : 10
Join date : 2016-04-16

View user profile

Back to top Go down

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

emalita

Posts : 217
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

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

Castle16

Posts : 10
Join date : 2016-04-16

View user profile

Back to top Go down

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

emalita

Posts : 217
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

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!!

Castle16

Posts : 10
Join date : 2016-04-16

View user profile

Back to top Go down

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

emalita

Posts : 217
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

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!

Castle16

Posts : 10
Join date : 2016-04-16

View user profile

Back to top Go down

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!

emalita

Posts : 217
Join date : 2016-03-29
Location : USA

View user profile

Back to top Go down

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

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum