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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


Just Diagnosed with Vulvadynia

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Just Diagnosed with Vulvadynia

Post  CherryTree23 on Tue Aug 02, 2016 9:11 pm

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 scenario we'll just remove the skin...yikes. This doctor was a jackass. Now, getting depressed, scared and a burning vagina. Someone please help

CherryTree23

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Re: Just Diagnosed with Vulvadynia

Post  emalita on Tue Aug 02, 2016 11:12 pm

Vulvodynia simply means "chronic vulvar pain without an identifiable cause" (per the National Vulvodynia Association). It is a diagnosis of a symptom, not a disease. The cause of the pain or burning is different for everyone. It can be caused by things like nerve issues, irritants/allergies, disrupted flora (inflammatory vaginitis - this is part of my issue), undiagnosed skin conditions (lichen sclerosus, lichen planus, etc.), pelvic floor dysfunction, etc. So don't be too nervous because the doctor basically just told you that he has no idea what's wrong with you, and I would personally be very leary of a doctor who starts talking surgery so soon.

I would really recommend finding a vulvovaginal specialist who treats women with vulvodynia on a VERY regular basis. They are your best bet for proper guidance with treatments, but sometimes they can be useless idiots, too.

You've only had this pain since May (not diminishing your symptoms in any way); so you are still in the early stages, and hopefully you can help prevent it from getting worse. My advice is still the same...do not put anything on your vulva or in your vagina. Please give your lady bits a chance to figure themselves out. Certainly take the amitriptyline as prescribed since it is, I'm assuming, in pill form, but if your issue was caused by antibiotics and then irritated by antifungals, I can tell you with absolute certainty that throwing more lotions and potions at it is only going to make things worse.

Please be kind to yourself and take a few deep breaths before using another vulvar or vaginal treatment. You will get through this and will more than likely have a greater respect for your lady parts in the end Very Happy

emalita

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Re: Just Diagnosed with Vulvadynia

Post  CherryTree23 on Tue Aug 02, 2016 11:30 pm

Thanks so much for your reply! The Doctor was just so cavalier about it! He was so sure these nerve pills would get rid of all the pain in a few days...From my reading it looks like it can take much longer!

I will definitely not be putting on any lotions, that's for sure!! This whole thing is so confusing. I guess I wasn't looking at this as a broad diagnosis. It's hard to really understand what exactly this is!

CherryTree23

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I am cured of Vulvodynia

Post  angelique2016 on Tue Aug 16, 2016 12:13 pm

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 for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) used sparingly every night only before going to bed, and not to wash to much off in the shower in the morning. I did this for about 3 months, took the Nortriptyline at night before bed and used the ointment at night before bed. This worked, why, because the Nortriptyline, is for pain, and makes the brain stop thinking about the pain, as it has now become persistent pain, and the ointment, soothes the skin and it has properties in it to help heal the skin. Anyway I stopped posting on here as I was getting abused by people that were not able to get a hold of the medications in other parts of the world. So if anyone is interested in this information, and if you can get these medications, then it will cure you, you will need to do your pelvic floor exercises after you are cured to help strengthen the muscles again, but I hope that this information can help some people out there, as I know how extremely excruciating this problem is, it bought me to tears, and no sleep and could hardly sit, wanted to go to the hospital so many times, I nearly went crazy with the pain, and of course no intercourse what so ever, could barely even wee without pain, had to wear loose clothes, not tight jeans what so ever.

So I wish everyone all the best, please dont write back nasty things to me, simply because the medication might not be available in your country, perhaps look for medication that are of a similar nature that will help you. All the best everyone! Smile

angelique2016

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Re: Just Diagnosed with Vulvadynia

Post  Linda Williams on Sat Jul 22, 2017 2:13 pm

So, what type of treatment have you had with any luck.
I was diagnosed about a year ago but am sure I have had this longer although no doctor has ever diagnosed that. I have a very long history of UTI's. I have had a, hysterectomat age 51. Then painful test to see if I had IC., again infection after infections.intercourse very painfu. I had bladder repair in 2006. Went for quite some time without infections but I intercourse still painful. Then infections started again. The urologist did 1 exam in almost a year. I would have a UT I antibiotics ...finished them infection again. Finally found a doctor ob/gyn, sub specialty bladder. I have had several, infections. Then diagnosed with vestibulis, and vulvadynua. I have used nystatin, clove tail & topic or plus Premarin vaginally. Last week he had a compound of baclofen, gabpentin, & amitriptylene, it burns but was SO red down thre...this medicine may take weeks to help Any of you ever used this? Wondering about seeing a dermatologist.

Linda Williams

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My cure for Vulvodynia

Post  angelique2016 on Sat Jul 22, 2017 2:34 pm

Hi Lyndia, my doctor prescribed the following Advantan Fatty Ointment, applied sparing once a day and only at night before going to bed, around all the affected area, try not to wash it all off the next day in the shower it helps to heal the skin.  This product is available in Australia and only a few other countries, it might not be able in the UK or US.  To alleviate the brain thinking of the pain, take on tablet 10mgs of Allergron Nortriptyline Nortriptyline is a second-generation tricyclic antidepressant marketed as the hydrochloride salt under the trade names Sensoval, Aventyl, Pamelor, Norpress, Allegron, Noritren and Nortrilen  Take this just before you go to bed, it is used to stop the brain thinking of the pain, it used for pain management in low doses.  It takes about 3 months in total to get it under control, no intercourse, and thereafter pelvic floor exercises to strengthen the muscles again.  This worked for me very well, but I am not sure if you will be able to get the Advantan Fatty Ointment, it must be the ointment, it stays on the skin and prevents the urine from burning the skin constantly.  Anyway I hope this helps either yourself or someone else, as I know how painful this dreadful skin problem is.  xxxoo

Advantan Cream is available below on a UK pharmacy where you can buy online.  It might still work, may not be quite as effective, but it has the same ingredients.
https://www.unitedpharmacies-uk.md/Advantan_Cream_Methylprednisolone_Aceponate_01_15g_Tube_p_1411.html

or maybe here
http://o-t-c.co.uk/advantan-buy-online

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Re: Just Diagnosed with Vulvadynia

Post  Linda Williams on Sat Jul 22, 2017 3:17 pm

Thank angelinue! Is this a prescription or over the counter ?

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Re: Just Diagnosed with Vulvadynia

Post  angelique2016 on Mon Jul 24, 2017 1:57 am

prescription medication.

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Re: Just Diagnosed with Vulvadynia

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