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» I don't know what to do anymore
Sat May 26, 2018 5:21 pm by Aquaben

» 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.

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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 …

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 …

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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 …

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


vestibulectomy

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Re: vestibulectomy

Post  Alana3 on Fri Dec 07, 2012 2:48 am

I think it's more stitch pulling it feels kinda weird idk how to describe it. And every time I get pee and it gets in it burns any suggestions on how to stop that or when it will stop? Did you have it? And when I stop using those muscles after potty break it's like a dull ache. Sorry I'm probably flipping over nothing but wanting to make sure.

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Re: vestibulectomy

Post  jen007 on Sat Dec 08, 2012 5:16 am

I don't remember if that happened to me or not, but I'd say pour water on yourself while you're peeing. Like some warm water. It should help keep the urine out of your stitches. I'd say that's normal though. Don't worry about too much. That muscle ache feeling is normal. It should last too long though. Until you get the surgery you never realize how many different movements are linked to that area to make your muscles react that way.

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Re: vestibulectomy

Post  Alana3 on Sat Dec 08, 2012 12:56 pm

True and what about regular burning/itching all the time? Is that normal too? It's where he took everything off so I guess it's my stitches that are burning and itching constantly? I mean I guess it makes sense too I just don't want to have gone thru this for no reason it's freaking annoying so now I have muscle pain and an itchy burny feeling. Not having fun

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Re: vestibulectomy

Post  jen007 on Sat Dec 08, 2012 2:15 pm

The itching is normal. I don't remember having a burning feeling though, but like I said everyones recovery is different. The stitches are probably just rubbing you the wrong way. Once you start soaking that should go away. Everything you're feeling is normal. Don't freak yourself out! And don't question the surgery. I don't think you would've done it unless you were 100% sure about it. It will be worth it! Don't stress too much about every new pain. I was freaking out through out my entire recovery for nothing. You'll develop different feelings down there over the next few weeks, it's all normal! Don't stress, I'm sure you're healing just fine Very Happy

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Re: vestibulectomy

Post  Alana3 on Sat Dec 08, 2012 2:28 pm

Easier said then don't ughhhh lol

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Re: vestibulectomy

Post  jen007 on Sat Dec 08, 2012 11:50 pm

I know, I know, but you just need to stay positive Smile

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vestibulectomy

Post  dueywag on Thu Jan 10, 2013 4:59 am

Alana and Jen,

Don't stop posting your progress notes. I feel like someone turned the TV off in the middle of a movie! I really am interested in both of your progress at these different stages.

I have had vulvar vestibulitis for 40 years. I'm 53 now, didn't marry until 43, and the sex issues helped bring the marriage to an end. I figure I'll be alone the rest of my life because any dating would be leading the person on. I'm not a sex outside of marriage person, and I can't imagine anyone being interested in someone who will never be able to have sex.

I diagnosed myself, and my gyn didn't believe me. Then I moved to Louisville and found a doctor who specialized in treatment. Did all the drugs, creams, compounded ointments, vulvar injections, lidocaine, PT, and counseling. Nothing worked. Well, the gaba and amitriptyline dulled it somewhat, but made me so out of it I couldn't function at work. That Dr. did not do surgeries so I quit trying. Then I was divorced, so it didn't matter anymore. Contemplating surgery no longer mattered, plus I'd read that it doesn't work for everyone and had made some people worse. So why bother?

Now I'm alone and wonder if I should reconsider surgery. But now I am on disability and no way I could ever pay $25,000, or even $5000. Don't even know if there's an experienced surgeon in the Pittsburgh/Cleveland area.

Soooo...I am really interested in hearing your progress at the different stages. I realize, too, that you both are much younger than me and would definitely heal faster and better (I am post menopausal and have fibromyalgia). I am terribly afraid that my condition would be made worse. But still, I would like to hear how you are doing and if sex is possible.

Hope all is going great!

Sharon




Last edited by dueywag on Thu Jan 10, 2013 5:00 am; edited 1 time in total (Reason for editing : added comment)

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Re: vestibulectomy

Post  jen007 on Thu Jan 10, 2013 5:20 am

Hi Sharon!

Sorry for the lack of posting! It's been about 6 months since I had the full vestibulectomy and I think I'm doing pretty well! I'm about 95-98% pain free at this point. I was finally able to have sex after about 4 months of healing. It's not good sex, but I'm just happy I could finally consummate my relationship. I only say it's not good because it's still new to the both of us and I'm still healing. If I don't dilate sex doesn't happen. I'm starting to consider trying PT sometime during the summer. I'm a full time college student so it's hard for me to do anything that doesn't involve school during the semester. My muscles are extremely tight and I think that's why I'm having sex issues. I'm not able to "finish" during sex sadly, but I'm still very hopeful that with time and future PT I will be good to go!

I had my surgery done by Dr. Andrew Goldstein in NYC. He's only on the east cost I think, but maybe you could contact his office and see if they can direct you to a specialist in your area that knows about surgery. You could also join the NVA and they will tell you where you can find a surgeon in your area. I think it costs $45 every year. The money goes towards research in this area.

The surgery costs $9,000. Usually this surgery is not covered by insurance. It's usually out of network. I have medical insurance that accepts out of network procedures if there is no one else in network that can do the surgery. I only got maybe $1200 or $2000 back from insurance. I'm now in the process of appealing it to try and get more money out of it if I can. It's so expensive, but in my mind it's worth it. It will improve your life in so many ways. I know you said you're older, but I don't think It matters if you're 20 or 60 years old. You deserve to be happy and if this could help you and you could get the money for it I'd suggest looking into it.

Btw I always check the fourm almost everyday. I'll try to just write an entry more often than not!

Talk to you soon!

-Jen

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vestibulectomy

Post  dueywag on Thu Jan 10, 2013 6:01 am

Thanks Jen!

I was a member of NVA for several years back when there was no other source of information out there on this condition. But there is so little progress, it seems, that after a year or 2, it was a waste of $45. I had already tried everything I read about except for the pudendal nerve block and surgery. That's where I read the horror stories of so many women getting worse after the procedures that I decided against pursuing surgery at that time (maybe 8 years ago.)

It's frustrating and maddening that womens' issues aren't covered by insurance, while mens' little problems of erectile dysfunction are fully funded, you know? I mean, this is NOT just a sex thing. It's a PAIN and quality of life issue, as well as a relational issue. But if it was a man who couldn't have sex because it felt like razor blades dipped in tabasco sauce, you can guarantee it would be covered!

That was a fantasy of mine to try to get my selfish, uncompassionate, abusive ex-husband to understand that I wasn't punishing him by not wanting or initiating sex. It hurt, but he didn't care. I wanted to take a jar of jalepeno pepper juice and dip his jewels in it and say "let me do that to you every day, after rubbing it with sand paper, and see if you enjoy it and want to initiate it." I think that is the only thing that would have even come close to getting him to even begin to understand why I hated him after a couple years of his forcing me to have sex. He didn't realize that I was going through all these treatments (and spending half my life having painful and humiliating things done in doctors' offices) so that he could have sex, knowing that I wasn't going to get anything out of it except pain. In the end, it wasn't enough for him.

Since then, I've only gone out with 1 guy, but ended it because I figured I was leading him on. So I figure, unless I can find a way to only meet impotent men, I have no chance of ever having a meaningful relationship.

Ok, I'll stop the pity party! Thanks for letting me vent Smile

sharon

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Re: vestibulectomy

Post  Alana3 on Thu Jan 10, 2013 2:11 pm

Hey,



I tried to respond earlier but my phone wouldn't let me. I saw you were from Louisville, I lived in Lexington for 4 years! I got my surgery fully covered (except for the down payments and such). My surgery remains to be seen, I still have stitches in 5 weeks later and it's still pulling and I still have pain, but Jen (and my doc) reassured me that its ok. I didn't want to post because it's been an emotional rollercoaster and not all days are pleasant, but I think once the stitches come out I'll have a little relief (I Hope!!)

I can't even tell you how many horrible things I've had done to me before I found a doctor who was able to help. I live in Florida and the doc I see is thankfully half an hour away from me in West Palm Beach. He's awesome. As for the surgery, I thought go for it what do I have to lose at this point? Most women that I've talked to have been significantly better after the surgery, I have no idea if that's because of age or what, but of a study only 7% were dissastisfied I liked those odds, so why not? I'm not going to lie, it's a really rough surgery to recover from and emotional too, but it wasn't as bad as I thought it would be. Especially going thru what I have already been thru. That and it made sex a cakewalk- seriously! I check this everyday too so if you have any more questions- feel free to ask Smile but keep in mind I'm 5 weeks into my surgery and am still in the "recovery" phase. UGH!

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Re: vestibulectomy

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