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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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which meds for what?

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which meds for what?

Post  yoginimom on Tue Oct 21, 2014 2:51 am

I have been reading through this forum and finding a lot of threads that mention various medications, but do not list what they are for. Is there a list of meds anywhere on this forum with a description of what they are for? Or matching certain symptoms with certain meds?

My Dr. has not suggested any meds aside from Fluconzole which is the no name for Diflucan, (a yeast treatment).

Can anyone help me with this? I really want to cure this. It's been basically a year of hell for me.

So far i have tried the gynecologist, who refereed me to the internal physio, and put me on fluconozole, which does not help. So far i am having the best luck with lidocane and coconut oil for the pain and burning. But nothing makes it go away completely.

What are your symptoms? What have you tried? What has worked?

Thanks in advance.


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Re: which meds for what?

Post  Alana3 on Tue Oct 21, 2014 7:23 pm

Medicine doesnt necessarily work with every case. I don't know why they would try diflucan, do you have yeast? I tried everything under the sun for 7 years before I said fuck it (sorry language) and went ahead and got the surgery as a last resort. But I tried Amitriptilin, Gabapentin (both for nerve pain), lidocaine, various forms of antibiotics, herpes drugs (which I dont know why they would even do that but ok), topicals, creams, suppositories, bull shit after bull shit. None of it worked for me. But that doesn't necessarily mean it wouldnt for you. Do you have pain all the time? Or just with sex? Is it nerve or muscles?

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Re: which meds for what?

Post  yoginimom on Tue Oct 21, 2014 7:37 pm

I think they are trying to rule out yeast. but i've been on diflucan for 3 weeks with no improvement. My symptoms are burning and sometimes stabbing pain in the vulva 24/7. If i try to have sex i'm in much worse pain for a min of 3 days after. So i guess i have unprovoked, as worse with provocation type V. So far i have tried lidocane, and that does help. Cocnut oil and Vit E oil do help as well as vaginal probiotics all give me mild relief. Nothing takes the pain away completely though. It's so frustrating. Sad

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Re: which meds for what?

Post  Alana3 on Wed Oct 22, 2014 2:41 pm

Yeah you don't have yeast, it would show up on lab work. Stop taking that drug you're going to build resistance to it and it wont work when you need it to. I only had provoked V, but I know of a bunch of people who had results with unprovoked. Drugs like Cymbalta, Amitriptyline, Gabapentin, are all things that could maybe make a difference for you.

When it became awful for me, I made a paste of baking soda and warm water, and left it on for 10-15 minutes. It would take the stinging out. But if you haven't actually tested positive for yeast, don't continue using something that you don't even have. If you did have yeast, your pain would be gone now. Do get tested for ureaplasma and strep B (they will probably tell you only pregnant women have strep B, but that's not true, I tested positive twice for it and have never been prego). It can cause burning, itching, etc. Same with ureaplasma.

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Re: which meds for what?

Post  yoginimom on Wed Oct 22, 2014 10:30 pm

Thank you Alana,

I have stopped the diflucan and using vit e topically along with coconut oil and lidocae. All of them work to take the edge off, but the lidocae works the best.

Is it normal to have a lot of redness with V? i use a mirror to apply the lidocane and i notice it's always very red in certain areas.

They have said they took swabs for "everything" on three different occasions and it all came back negative, but i will get them to test again specifically with those 2 you mentioned.

can i ask what you did that actually worked for you? Also what are the side effects of the internal botox? I am desperate enough to try anything, but that's always always the wise way to go.

Thanks for taking the time to get back to me.

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Re: which meds for what?

Post  yoginimom on Tue Oct 28, 2014 3:22 am

Alana3 wrote:Yeah you don't have yeast, it would show up on lab work.  Stop taking that drug you're going to build resistance to it and it wont work when you need it to. I only had provoked V, but I know of a bunch of people who had results with unprovoked.  Drugs like Cymbalta, Amitriptyline, Gabapentin, are all things that could maybe make a difference for you.  

When it became awful for me, I made a paste of baking soda and warm water, and left it on for 10-15 minutes.  It would take the stinging out.  But if you haven't actually tested positive for yeast, don't continue using something that you don't even have. If you did have yeast, your pain would be gone now.  Do get tested for ureaplasma and strep B (they will probably tell you only pregnant women have strep B, but that's not true, I tested positive twice for it and have never been prego).  It can cause burning, itching, etc.  Same with ureaplasma.  

I got the gyno to order the tests. But she's really convinced it's V at this point. She's prescribed gabapentin topical as well as Amitriptyline. i read the side effects of Amitriptyline and it's freaking me out. i'm not sure if i am going to try it or not. Sometimes i feel a lot like a guinea pig.

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Re: which meds for what?

Post  Alana3 on Tue Oct 28, 2014 7:08 pm

I had it done in a compound and that helped me a lot. No side effects thank god. You can always try it and get off you never know it might work!!!

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Re: which meds for what?

Post  yoginimom on Wed Oct 29, 2014 2:10 pm

Alana3 wrote:I had it done in a compound and that helped me a lot. No side effects thank god.  You can always try it and get off you never know it might work!!!


Thanks Alana, i had a major flare up from the topical gabapentin. Did you mean that the amitriptyline can be used topically? I may try that next. Some of the side effects listed are freaking me out. I think my next move may be the oral gabapentin.

Can i ask which surgery you did?

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Re: which meds for what?

Post  Alana3 on Mon Nov 03, 2014 7:43 pm

Yes I used both topically with lidocaine it didn't do anything for me whatsoever. But mine was provoked. I had a vestibulectomy 2 years ago in December best decesion ever, but not to be taken lightly. It's very last resort, and doesn't always work. Though most people I have talked to have said the surgery was the best thing they did (me included). If you have any other questions, let me know Smile

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Re: which meds for what?

Post  yoginimom on Wed Nov 05, 2014 1:13 am

I have a gut feeling the ami isn't going to work for me. I really really don't want to go on it for nothing with all those side effects. Though it seems to be getting worse by the day and nothing helps. Did you do anything for pain when you were at your worse? I'm starting to seriously consider the surgery option. Though i know it will be horrible. How much pain were you in right after? And do you find you have any dryness issues now? I'm already dry, so i can't imagine losing more, and i am so hyper reactive to anything i doubt i could do something like replens. Did they give you ideas for dryness? Or is it a non issue? Thanks so much for answering!

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Re: which meds for what?

Post  Alana3 on Wed Nov 05, 2014 8:59 pm

You are going to have to try a lot of stuff before they will do surgery on you- unfortunate but truthful. I tried a million meds, physical therapy, oral, topicals, lidocaine, antibiotics, the list goes on. The surgery wasn't that bad, it hurt to sit for like a week but I went out to lunch 3 days after my surgery and was fine (except I ripped some stitches which honestly probably would have happened anyway and it didn't hurt). Lots and lots of ice is what got me through and rest. That too. You're really tired after surgery. I have absolutely no issues with dryness, but I didn't have it before, so it wasn't an issue or concern or something I really even asked about to be honest. The only thing that was somewhat awful was vomiting right after surgery, the rest was just an annoyance. And it wasn't that painful. I didn't wake up in pain or anything. I just took my painkilelrs exactly when I was suppsoed to and switched to Advil after 2 days or so. It really wasn't that big of a deal and completely 100% worth it.

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Re: which meds for what?

Post  Alana3 on Wed Nov 05, 2014 9:00 pm

And just to let you know surgery is not recommended for people who have unprovoked vulvodynia.

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Re: which meds for what?

Post  sailor_moon on Thu Nov 06, 2014 8:11 pm

I get red raw in certain areas. The more itchy and sore I am, the redder my skin flares up.
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Re: which meds for what?

Post  yoginimom on Mon Nov 10, 2014 6:53 pm

Sailor moon, do you have provoked V? Have you had success with any treatments as of yet? I'm still leery of the antidepressants, but the pain is making me more open minded. :p

I just discovered i also have 'mast cells' in the vulva. Not sure what i am allergic to but antihistimines do help.

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Re: which meds for what?

Post  yoginimom on Mon Nov 10, 2014 6:56 pm

Alana3 wrote:You are going to have to try a lot of stuff before they will do surgery on you- unfortunate but truthful.  I tried a million meds, physical therapy, oral, topicals, lidocaine, antibiotics, the list goes on.  The surgery wasn't that bad, it hurt to sit for like a week but I went out to lunch 3 days after my surgery and was fine (except I ripped some stitches which honestly probably would have happened anyway and it didn't hurt).  Lots and lots of ice is what got me through and rest.  That too.  You're really tired after surgery.  I have absolutely no issues with dryness, but I didn't have it before, so it wasn't an issue or concern or something I really even asked about to be honest.  The only thing that was somewhat awful was vomiting right after surgery, the rest was just an annoyance.  And it wasn't that painful.  I didn't wake up in pain or anything.  I just took my painkilelrs exactly when I was suppsoed to and switched to Advil after 2 days or so.  It really wasn't that big of a deal and completely 100% worth it.  


It's nice to know the surgery wasn't a nightmare for you. That kind of gives me hope. Smile Though ... good to know that they don't do it with unprovoked V, which is what i have ... so they tell me. So may not even be an option in my case. Did you have any success with managing your symptoms while you waited for surgery?

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Re: which meds for what?

Post  sailor_moon on Mon Nov 10, 2014 7:22 pm

Unfortunately my V is unprovoked.  I itch almost 24/7 and I burn and get sore too. I have found it gets worse with movement. Exercise is out of the question.
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Re: which meds for what?

Post  yoginimom on Mon Nov 10, 2014 9:03 pm

sailor_moon wrote:Unfortunately my V is unprovoked.  I itch almost 24/7 and I burn and get sore too. I have found it gets worse with movement. Exercise is out of the question.

Oh OK, that's the same for me. Is your pudendal nerve involved? I know when i get my sacrum adjusted it helpes a lot. But most of the time it's hit and miss for what works and what doesn't.

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Re: which meds for what?

Post  sailor_moon on Mon Nov 10, 2014 9:38 pm

I have no idea what nerves are involved.  Im under investigation ATM... I have a LOT of hormone problems and suspected endometriosis.  Im on a 3-6 month waiting list to have an operation,  a hystoscopy and laparoscopy,  he is going in to look at all my insides and fixing any problems he can find.
I hope its not nerve related coz on here most people with nerve issues never get fixed. How do you gix nerve lroblems? SadSad
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Re: which meds for what?

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