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» I don't know what to do anymore
Yesterday at 5:21 pm by Aquaben

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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.

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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 …

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


Cystoscopy

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Cystoscopy

Post  Kathye10 on Wed Aug 07, 2013 6:52 pm

Hey Ladies,

I saw a new Dr today who is a highly regarded Uro/Gyno. He did the Q-tip test (like I haven't a a bunch of those already) and said that my urethra had pain when pressed upon. I have never had any bladder issues with this, as far as pain goes. But I do have to push a little extra to get it all out. I have pelvic floor dysfunction and I am seeing a PT for that. I'm questioning whether or not to do the test. He says I should know if there is something wrong in that area as well. He knows I cannot afford all these procedures so he will do it for just my co-pay and write off the rest (very nice) But I want to know if 1.) This is a painful procedure 2.) Can it cause any complications?

Thank you!
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Re: Cystoscopy

Post  Alana3 on Wed Aug 07, 2013 7:05 pm

If your doctor prescribed it its probably worth it. You're knocked out typically and it might burn to pee aftrr. With any surgery there is a risk of complications. You just have to ask yourself is it worth it to find out or stay sick? Sounds like they may be testing you for IC. Look it up or ask your doctor its done everyday tho so I doubt youre at risk for many complications but there's always a chance of anything happening. If you dont have bladder pain I don't know why he'd want to do that. PFD would cause you to strain a bit too...

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Re: Cystoscopy

Post  Sarah001 on Thu Aug 08, 2013 8:31 am

Pelvic Floor Dysfunction as you know causes us to force the urine out so that's definitely caused by PFD and it also can tighten around the urethral area and cause pain there too. Alot of people who have been diagnosed with IC either rightly or wrongly find treating the pelvic floor eliminates symptoms so PFD can mimic IC. I would say ask your physio about the procedure and see if he/she thinks it's a good idea, remember more pain will tighten the pelvic floor up even more so it's not something I would rush into without a physio talk first but if they think it's a good idea then it's entirely up to you whether you go ahead or not. IC has some dramatic bladder symptoms and if you've had none except for the pushing the urine out past tight muscles I think it's unlikely you have IC or any other bladder problems for that matter. Don't feel you have to have every test done suggested if it doesn't seem right for your symptoms, you can always go back once you've dealt with the muscular side of things if you still have some symptoms.
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Re: Cystoscopy

Post  Kathye10 on Sun Aug 11, 2013 2:29 pm

I agree. I did not mention to him that I have PFD, if he took a few seconds to check maybe he would have known. I believe it is totally muscle related and since I have no burning in my urethra or bladder, it think it's best to stay away from that procedure. I don't need any "after complications" or it making matters worse. Thank you ladies for your feedback. That's a big NO on that test, lol Hope you are both feeling as good as you can Very Happy 
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Re:CYSTOSCOPY

Post  Sunflower82 on Tue Aug 20, 2013 4:15 pm

Hi,
I had two years ago when I first started this long journey. I'm going to be honest it is very uncomfortable after its a little like going for a wee with shards of glass in it! But the more you drink the more it eases off! You have to go to the loo before you leave, after about 4 hours and lots of litres of water the pain does go way. They give you a course of antibotics to take as the risk of infection is high but I never got one ! For me they didn't find anything and said it was from IC but it turned out years later this was the start of vulvodynia.

Hope this helps.

Kt

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It doesnt hurt that much

Post  Jessica11 on Wed Aug 21, 2013 12:30 pm

Ive had it done before, and it really doesnt hurt that much. If youve had alot of bladder infections before and theyve done a clean catch on you (catheter inserted into bladder to get urine sample) instead of peeing in a cup, it feels like that. When they first insert the camera, thats the worst part of it, and it only lasts a couple seconds, and they also put numbing gel in there beforehand, its not as bad as you think its gonna be, but seeing all the docotrs and nurses around me, and being told it was considered a "surgical" procedure made me really nervous:cyclops: pale but it was cool, and the whole thing only took 10 min

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pee

Post  Jessica11 on Wed Aug 21, 2013 12:35 pm

Yea, while they are looking in there, they spray water in your bladder to get a better look see at things and I peed alot after, and it hurt for a few days a little bit when I peed, thats all, really, not a big deal.
Many times people with vulvodynia, also have a condition called interstitial cystitus.
Many times, the whole vulvodynia thing starts with interstital cystitus, cuz your on tons and tons of antibiotics to get rid of repeat bladder infections, and then you end up with a yeast or bacterial infections cuz ABX kill off all the good bacteria, and its just this whole vicious, horrible, nitemare cycle.

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Re: Cystoscopy

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