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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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 …

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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.

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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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Coffee and Amitriptyline

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Coffee and Amitriptyline

Post  noni on Thu May 26, 2011 10:21 am

I felt it important to post this.

Any ladies on here taking Ami need to know that coffee effects the effectiveness of this drug.

food/herb affecting drug performance and toxicity: Herbs containing Tannins as in beverages such as Coffea arabica (Coffee) and Camellia sinensis (Tea)

• research: Studies of the interactions between tricyclic antidepressants, particularly amitriptyline and imipramine, and tannin-containing herbs, such as coffee and tea, observed the formation of strong complexes in test tubes. Researchers raised the concern that should this interaction occur within humans using these two substances togther the absortpion of the drugs could be significantly reduced or rendered inconsistent.
(Lasswell WL Jr, et al. J Pharm Sci 1984 Aug;73(Cool:1056-1058.)

• nutritional concerns: Pending further research individuals taking tricyclic antidepressants, particularly amitriptyline and imipramine, might reduce their risk of problematic interactions between the prescription and tea or coffee by separating consumption of the beverages from taking the drug by at least two hours.



http://home.caregroup.org/clinical/altmed/interactions/Drug_Classes/Tricyclic_Antid.htm
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Re: Coffee and Amitriptyline

Post  Sebby (Admin) on Thu May 26, 2011 8:11 pm


Again...thanks for posting this

I think you should train to be a doctor!!

Your a real asset to this forum cheers

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Re: Coffee and Amitriptyline

Post  noni on Thu May 26, 2011 9:22 pm

Thank you Sebby.

I encourage every woman on here, who are taking meds for their pain, to look at foods/substances that react negatively and positively with the drugs.

Take care all
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Re: Coffee and Amitriptyline

Post  Mouse on Fri May 27, 2011 8:05 am

Noni, I know I am preaching to the choir but I think we should look at all things we can control. Like everything we put in or do to our bodies. We take all these drugs without questioning it because a Dr said so. Look how that turns out :\

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Re: Coffee and Amitriptyline

Post  noni on Fri May 27, 2011 8:40 pm

Hey Vicki, you are absolutely right.

But, for some us, drugs have been the only thing to give us relief from this crap. And I just think we need to know as much as possible about drug interaction with other things.

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Re: Coffee and Amitriptyline

Post  Mouse on Fri May 27, 2011 10:07 pm

Hey Noni, sorry I completely missed the point of the discussion =) You are right of course, everything is connected somehow.

Can you tell I'm a little frustrated with Drs? I've just had to battle for six months for a fucken vitamin supplement. You would think I was asking for bloody crack cocaine. Assholes. I got fobbed off so many times I started ringing daily. I could write a book of how many ways to not answer a simple question. In the end I got the stuff without doing the "very expensive and no longer funded" test to see if I was deficient. Gggrrrrr! So they gave me 3 tablets which last 3 months and then I'll be doing that exercise all over again. I might bypass the GP and go straight the specialist next time.

It will be a no coffee day for me today. There's none in the house.

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Re: Coffee and Amitriptyline

Post  noni on Sat May 28, 2011 12:41 am

Hey Vicki,

Im so sorry it has been such a hassle for you to get your supplements. And they`re only supplements, geez it would probably be easier to get methadone, atleast here in Canada, lol.

I love coffee. Regardless of the heart palpitations and excessive sweating...and yes now apparently it interferes with amitriptylines effectiveness, go figure. I cant win.

Im frustrated too. This condition is so tedious. Doctors visits, diet modifications, crotch exercises, etc etc...

...life cant be a 24/7 crotch watch. Theres so much more out there!

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Re: Coffee and Amitriptyline

Post  Zazu on Mon May 30, 2011 1:42 pm

"Crotch watch" haha amazing! I love it! Sometimes it feels like that's what life is getting reduced to. When your to-do list reads physio exercises, dilator work, food modification, meditation, physio appt., therapist appt., and massage appt., where is the time for work, or play? Or even weekend errands?? It also creates this standard for what you're "supposed to do" that can leave you feeling like you're never doing enough. Maybe it hurts because you didn't stretch, or ate some chocolate, or .... or... And the ultimate mind eff-up - maybe the effort of doing all these thing is stressing you out too much and THAT is causing the pain!! Bah!
Mini-rant! Done now Smile
@Noni - Canada! I didn't know anyone else on here was from Canada. I'm in Toronto. Whereabouts are you?

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Re: Coffee and Amitriptyline

Post  noni on Tue May 31, 2011 3:30 am

Hey Zazu!!!

Yep im in Toronto!

And actually trying soooooooooooooo desperately to start a support group in the city!!! Like for the last 7 months.

e-mail me at vulvodyniagroup416@gmail.com if you are interested.

Take care,

Noni Smile
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Re: Coffee and Amitriptyline

Post  Joolibee on Mon Jun 13, 2011 4:00 pm

Wow! Don't know how I missed this posting, but I find this very interesting. Amitriptyline never seems to work for me, except when combined with other meds. I only drink about 2 cups of coffee per day, but never thought about the timing of it. I'll try to make sure I leave at least 2 hours between the coffee and ami and see whether it makes any difference. BTW, I've discovered that ami can help as an anti-histamine. When I stop taking it, my chronic hives gets worse. Anyway, thanks for the tip.

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Re: Coffee and Amitriptyline

Post  noni on Mon Jun 13, 2011 5:09 pm

Yes, apparently in one study done on rats it was shown that when coffee was administered to them that Amitripyline was not as effective as compared to the rats not consuming coffee.

I dunno...but I think theres someting to it.

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Re: Coffee and Amitriptyline

Post  Sarah001 on Mon Jun 13, 2011 7:38 pm

I'm not sure if it applies to me, I take 50mg of Ami before I go to bed and never drink coffee for at least another 10 hours and I don't have much luck with the Ami anyway. Rolling Eyes I once stopped coffee and started drinking decaf tea and it made no difference. Maybe it works for some and not others like every-bloody-thing!!
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Another thing that doesn't mix with ami

Post  Aussie on Tue Jun 14, 2011 6:25 am

So I have smoked weed on occasions prior to all this crap. I was sitting with my friend the other night watching a movie and felt like some decent pain relief (alcohol sets off my bladder), so out it came.

Aside from being completely pain free, happy and relaxed (which made a wonderful change) I got a horrible heart racing sensation. The next day I felt awful! My heart was still racing. I googled it and ami and weed don't mix at all, people have ended up in intensive care with heart palpitations!

I just wanted to put it out there. I don't want anyone else to do this. I was an idiot and should have done my research. I have come off ami now as it wasn't doing anything for the v after 5 months anyway. I hope I have not offended anyone by this post, just wanted to make everyone aware, just incase.

I also hope I don’t get in trouble for posting this? Sorry!!

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Re: Coffee and Amitriptyline

Post  Sarah001 on Tue Jun 14, 2011 11:24 am

It's always useful to know interactions. I take all my various pain meds every day then I'll get a migraine and take my migraine tablets and while I'm taking them I find myself thinking how easy it must be to overdose on presciption medication.
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Re: Coffee and Amitriptyline

Post  mary jane on Wed Nov 20, 2013 9:19 pm

crap. is this why I'm in pain today ? Sad
. I take 3 ami in the morning and then I have a latte.
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Re: Coffee and Amitriptyline

Post  Alana3 on Wed Nov 20, 2013 10:25 pm

Caffeine is bad on so many levels

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Re: Coffee and Amitriptyline

Post  mary jane on Wed Nov 20, 2013 10:55 pm

yes, I know, I tried quitting for 2 weeks, but the depression over not being able to enjoy the little things got to me in the end.
I shall try and quit again and let my nervous system relax or at least QUIT MAKING ALL THE RANDOM NERVES FIRE
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Re: Coffee and Amitriptyline

Post  Alana3 on Wed Nov 20, 2013 11:17 pm

Decaf?

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Re: Coffee and Amitriptyline

Post  mary jane on Wed Nov 20, 2013 11:28 pm

forgot about that option Very Happy
thanks, Alana!
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Re: Coffee and Amitriptyline

Post  Alana3 on Thu Nov 21, 2013 12:58 am

Haha no problem!

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Re: Coffee and Amitriptyline

Post  Annie82 on Thu Nov 21, 2013 9:56 am

Decaf still contains tannic acids or tannins.

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Re: Coffee and Amitriptyline

Post  Alana3 on Thu Nov 21, 2013 12:10 pm

Yeah but if you have to have it or are trying to wean yourself off its a way to go...

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Re: Coffee and Amitriptyline

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