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» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

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

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 …

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

Comments: 0

vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

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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


Just diagnosed / Aimtriptyline weight gain!

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Just diagnosed / Aimtriptyline weight gain!

Post  Castle16 on Sun Apr 17, 2016 2:44 pm

Hello:) So glad to find this online support group site! My symptoms started almost 6 months ago (Nov 2015). Woke up one morning with frequent urination (I've always had frequency since menopause) and never had a UTI before. Fast forward...after seeing urologists, a gynecologist, urogynecologist, NP who specialized in Interstitial Cystitis, 2 cystoscopies, many ecoli UTI's....I feel the final diagnose is correct - vaginal atrophy (started premarin cream 4 months ago) and vulvodynia (just diagnosed with this couple days ago by gynecologist). Symptoms went from frequent urination, to severe burning, to a CONSTANT horrible urge to urinate, to a steady burn (still some frequency, especially when another UTI) on a pain scale from 4-6. I couldn't tell if it was my urethra or my vagina where the burn was coming from! Gyno the other day said there was redness around the outside of my vagina most likely causing the burning (said urethra and vagina inside looked good). Vaginal was not sensitive to touch at all, but I was burning badly after the vaginal exam was over.

She prescribed a vaginal ring, liquid lidocaine that I am to soak in a cotton ball and sleep with it pressed against my vaginal opening at night, and she wanted me to continue on the aimtriptyline I was put on 2 months ago by the NP I saw. I told her NO WAY! Reason being, in 2 months I have already gained 14 lbs! It causes carb and sweet cravings and I am trying not to indulge, but I read that the weight gain from it could also be hormonal related. I know over 50% of women gain weight on aimtriptyline. After 2 months on it and still have irritation/burning (I have frozen ice down there 24/7) I don't think the aimtriptyline is even helping (other then I sleep great). She said it could take longer, but I would like to try the ring and lidocaine without the aimtriptyline because I refuse to gain any more weight! Has aimtriptyline really helped anyone with my kind of burning? Thank you!!

Castle16

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Re: Just diagnosed / Aimtriptyline weight gain!

Post  emalita on Sun Apr 17, 2016 4:44 pm

Hi and welcome!

Don't you hate that everything is so darn close down there that it is hard to tell exactly what hurts! I've had the same issue with not knowing if it was my urethra or vagina that was causing the symptoms. I refused antidepressants and anticonvulsants from my OBGYN. I was on them as a kid for migraines (including amitriptyline), and I hated the way they made me feel. So, unfortunately I can't speak to them for vulvodynia, but I know a lot of women have given them a try on here.

Have you ever tried a powder supplement called D-Mannose for prevention and treatment of your UTIs? Two of my Naturopaths recommended it to me when I was having UTI issues. It only works on UTIs caused by E coli, but there are studies on its effectiveness on PubMed. So it's not just fluff that only Naturopaths use. It is a little sweet and a little bitter but super easy to take (just mix it with a little water). I bought mine on Amazon for pretty cheap.

My current specialist has me on a bioidentical estrogen tablet vaginally every other night (among other things), but I'm only starting my 5th week of treatment. He said it will take about 2.5 to 3.5 months for me to feel a difference; so I can't comment on how well it's working yet.

I assume all of your tests come back negative for everything? The only thing that stopped my urethra/vaginal burn (also had a weird prickly feeling at my urethra as well) was boric acid suppositories. However, that did nothing for my current pain, but at least I can check one thing off my list.

I hope the ring and lidocaine relieve your pain!!

emalita

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Re: Just diagnosed / Aimtriptyline weight gain!

Post  fairlight10 on Sun Apr 17, 2016 5:08 pm

Castle 16 Go back to your doctor and ask to be put on nortriptyline 20mg at night.I have been on this since June 2012 with a diagnosis of vulvar vestibulitis. Your story is very similar to mine. It takes a longtime for these meds to work but eventually I hope you will notice a difference. Persevere with the side effects.

fairlight10

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Re: Just diagnosed / Aimtriptyline weight gain!

Post  Castle16 on Sun Apr 17, 2016 6:29 pm

Thanks for your reply about nortriptyline - did you have weight gain from this med? I know it's just like aimtriptyline. I was hoping the vaginal ring and the liquid lidocaine/soaked cotton ball would be enough treatment because the weight gain has been emotionally upsetting Sad. Really appreciate your responding. I'm new to this site, so not sure how to navigate it all. Not sure if I'm supposed to re-type my subject line in the 'post title' section under Post a reply -so sorry if I didn't do this right! I hope you are feeling better Smile

Castle16

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Re: Just diagnosed / Aimtriptyline weight gain!

Post  fairlight10 on Sun Apr 17, 2016 6:55 pm

Nortriptyline is a more advanced drug and more expensive than amitriptyline. It has far less side effects and suited me more than amitriptyline. I have been on 20mg until last September when my dr up it to 30mg to help with my migraines that I also have. That extra 10 has helped both conditions. I have put on a few pounds. Yes it does give you the munchies as someone else said on this forum.

fairlight10

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Re: Just diagnosed / Aimtriptyline weight gain!

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