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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


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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