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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

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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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