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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

Comments: 6


Questions after Vestibulectomy

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Questions after Vestibulectomy

Post  jenn31 on Sun Jan 20, 2013 7:35 pm

Hi everyone,

I am new here, and am hoping for help and advice from anyone who's had a vestibulectomy. I've had VVS for the past 4 years, and it has been a hard journey. I had a partial vestibulectomy 4 weeks ago, and was unprepared for the complications. My vagina looks so weird and different, not at all like it looked before. The skin inside looks lumpy and uneven. I'm also scared that I won't be able to have vaginal lubrication anymore. My Bartholins glands were not removed, but my surgeon didn't tell me that sometimes vaginal advancement covers the glands. I wish I had known and now I'm really scared that I will never be able to get naturally lubricated for sex. Has anyone dealt with this issue? Can someone give me advice? I am really scared and worried about this, so help would be much appreciated! Sad

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Re: Questions after Vestibulectomy

Post  Alana3 on Sun Jan 20, 2013 8:03 pm

Hi!

I just finished my recovery and started going back to a normal routine this past week which included dialating (I use my vibrator). I just looked at it today for the first time. It does look different but I don't care because I have pain relief! You more then likely still have stitches in so don't judge anything yet. I actually noticed that im more lubricated than before but I don't know everyone reacts different. I will tell you I've gone back to working out which includes horseback riding and I have absolutely no pain it took a while and I def went thru weird phases but more then likely you still have stitches. Another plus is I am able to get my vibrator all the way in when before I couldn't. I think you'll be very pleased with your results. If you can't get natural lube you can always.buy some but you're still healing so give it tons. Lmk if you have any other questions! You mentioned complications what do you mean?

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Re: Questions after Vestibulectomy

Post  jen007 on Sun Jan 20, 2013 11:35 pm

jenn31,

First off welcome to the forum!

I had a full vestibulectomy this past July. Honestly I don't remember what my vagina looked like before surgery so I don't really care how it looks. To me it looks fine, but I'm sure it looks different than before. At 4 weeks though I wouldn't judge it yet. You're still going to be healing for quite a while. My surgeon told me recovery takes about 6 weeks for either a full or partial vestibulectomy so you still have about 2 weeks to go. I didn't look at mine for 2 months, which was advised by my surgeon, just because it could freak you out to look at it while it's still healing. Anyway just give it some time. Plus bumps are normal, it's from the stitches. I have them too, but I have them all the way around my vag :/ .

About the loss of natural lubrication, I wouldn't worry too much. With the partial they don't take as much out so you should be able to produce your own lubrication. If not you can always buy some lube at the store. With a full vestibulectomy you loose a third of your natural lubrication. So pretty much I no longer have my own natural lubrication. I'm not dried out, but I have to use a lot of lube before sex or it's not going to happen. I knew this before surgery, but still decided to go through with it because I had nothing left to loose at that point. With out it I would've never been able to have sex or any sort of a normal adult life. I'm really happy with my results and hope the same for you as well.

Don't be scared or worried. I know how you feel. I worry about pretty much everything and when I was about to do the surgery you can believe that I was completely freaked and worried about the results. It was an intense experience, but I made it through and so will you!

If you don't mind me asking where did you get your surgery done??

Let me know if you have any questions!

-Jen

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Re: Questions after Vestibulectomy

Post  jenn31 on Tue Jan 22, 2013 2:40 am

Hi Jen and Alana!

Thank you ladies so much for replying! I feel so much better after reading your posts. It's been scary, because I still keep thinking the same old pain will come back. Giving it time will help, and I'm encouraged that you both feel better! Jen, do you feel like the pain is mostly gone? My surgeon really was great and encouraging, I just tend to freak out about this stuff. I had my surgery in Orlando, FL, with Dr. Lamvu.

Alana, that is so cool, I horseback ride too! So you didn't have pain when you started riding again? I can't wait to go back, but it will probably be another month or so. I think I'm supposed to start dilators at 8 weeks, and am a little nervous about that. I guess by complications I just feel like my muscles are weird. I can't really describe it well, but did ya'll ever get a feeling like the muscles were tight and kind of drawn up? Maybe this is just because of the stitches? Thank you sooooo much!! Very Happy

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Re: Questions after Vestibulectomy

Post  jen007 on Tue Jan 22, 2013 3:30 am

Yes I do feel like my pain is mostly gone, however I do sometimes get random burning sensations that last for a few seconds, but nothing that concerns me. Along with my surgery, my surgeon also performed a hymenectomy which removed some of my hymen. That is still sensitive, but I think it will eventually go away. I'm pretty sure it's mostly scar tissue which takes the longest to go away. In some cases, from what my doctor told me, they will remove excess scar tissue if it continues to be a problem, but I think I'll be ok. I've been dilating pretty much everyday since my recovery period ended, which really helps! I'm now on the last two. Rubbing them on the painful areas really seems to make the pain go away after a while. For me it only usually hurts on my hymen where it was cut, but after dilating it feels much better.

And I'm totally there with you on the freaking out. I have panic disorder so that really didn't help me too much the day of surgery. Over all I'm really happy I went through with it. I do wish there was another less invassive way to cure this god awful disease, but what can you do. I'm glad it worked for me and I hope it works out for you too!

Please continue to update! I'd love to hear your progress. Plus if you have any questions or concerns feel free to messege me or leave more posts!

-Jen

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Re: Questions after Vestibulectomy

Post  Alana3 on Tue Jan 22, 2013 2:07 pm

I went to Lamvu too but hated her, so I had my surgery in WPB. Yes, my muscles hurt all the time, but this was the case before my surgery, and horseback riding certainly doesn't help. The dilators will help with that and I'm sure Lamvu will give you muscle relaxers. Do you live down here in Florida? Riding didn't really hurt all that much, I got on bareback first and then hacked over the weekend and I feel fine, but yeah I have a little pain that feels like VV but it's nothing of what it was. So don't worry you'll be fine, your surgery more than likely will not be 100% but you'll be pretty close, I'd say I'm about 90% right now. I'm starting physical therapy next Monday and I'll go from there! Some days are better than others, but more good than bad.

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Re: Questions after Vestibulectomy

Post  jenn31 on Wed Jan 23, 2013 2:36 am

Hi Jen and Alana,

Thanks again for the great advice. I am starting to feel more relaxed, think I just need to give it more time. I'm a little nervous about starting with the dilators, but I know it will help in the long run. They removed my hymen too, and I still have stitches there. I get these random times when my muscles all tighten up and it hurts. Did you have that? Maybe it will get better with time? How long did you wait before going back to physical therapy? Yeah, I would be really happy with 90% recovery, or even 100! Very Happy

Yes, I live in Orlando, FL! Did you have a good Dr. in WPB Alana? Where do you ride? I can't wait to start riding again, but I'm worried it will hurt...

Thank you both for the great help and advice. It really is hard to get over the anxiety and worry, I do panic a lot! Makes me feel better that I am not alone. Smile

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Re: Questions after Vestibulectomy

Post  Alana3 on Wed Jan 23, 2013 2:13 pm

Yes, my muscles hurt like crazy when I was healing the dilators are fine just GO SLOW and at your own pace! Everything you're feeling is normal so quit panicking (tho Jen and I messaged like crazy and still do about different panicked things!)



Yes, my doctor is in WPB his name is Jay Trabin, I really like him. I actually bought my horse from a trainer up in Orlando named Laura Murphy, she has a barn called Errol Equestrian Center, I think, have you heard of them?. But I live down in Boca and ride here.



You more than likely wont get to 100% but pretty close. I would have gone sooner to PT but she didn't have any openings until this coming Monday, but I got the ok to return to everything at exactly 6 weeks, but I was healing really well and quick- which was shocking to me because I tore some stitches- OUCH! Remember everyone is different and heal at different rates, depending on how much skin was removed, etc, etc, so be patient! I really should listen to my advice more often lol But stitches do hurt, and they pull as soon as they come out you should feel MUCH better within the week. At least that's what happened to me!

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Re: Questions after Vestibulectomy

Post  jen007 on Wed Jan 23, 2013 8:54 pm

I also had that muscle tightening happen! It really hurt for the first week too, because it just kept doing it. I tried not to worry about it too much. One thing I will always remember is something one of the nurses told me. She said trust your body. So I did :]. I hope you heal up well ! Your hymen area thats still there will take the longest to heal, from my experience anyway. Mine is still sensitive. Dilating will help with that over time. I feel like most vulvodynia sufferers have a type of anxiety disorder. Sometimes I wonder if it ties into it....

-Jen

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Re: Questions after Vestibulectomy

Post  jenn31 on Sat Jan 26, 2013 6:23 am

Thanks ladies, I really appreciate the advice and support. Today was a bad day, and I got really scared because I woke up with burning and it burned all day. I am freaking out and scared that the pain has come back. Did either of you have burning again after surgery? I am trying to tell myself it's ok, maybe a yeast infection? I just don't know!

It makes me feel better that you both had the muscle issues, mine still are tight and kinda painful. Honestly I feel like things didn't hurt too bad after the surgery, just general soreness, but now this weird burning is terrifying me. This Monday I go for my six week check up, and they take the stitches out. Any thoughts/advice? Sorry freaking out. Crying or Very sad

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Re: Questions after Vestibulectomy

Post  Alana3 on Sat Jan 26, 2013 3:45 pm

Yeah your fine I had it too and still do its probably your scar healing. Easier said then done but quit freaking out. I did it too but there's really nothing you can do except let it heal. But yes I had the burning. It'll feel better once the stitches are out but I still get pain I just not as bad as before thankfully

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Re: Questions after Vestibulectomy

Post  jen007 on Sat Jan 26, 2013 7:56 pm

I also had the burning around the 6 week point. It felt like a yeast infection. After that it would just itch like crazy. It's all normal! Just have to wait for it to heal. All those healing pains should be gone with in a few more weeks.

-Jen

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Re: Questions after Vestibulectomy

Post  Alana3 on Sat Jan 26, 2013 8:04 pm

I have a bad spasm today blah

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Re: Questions after Vestibulectomy

Post  jenn31 on Mon Jan 28, 2013 1:15 am

Sooo glad to hear burning at this point is normal! It does feel almost exactly like a yeast infection. I'll post again after I get the stitches out tomorrow; kinda nervous about it, hope it doesn't hurt too much! I have mixed feeling about Dr. Lamvu, some good, some bad. If this surgery does the trick though that's all that matters. I have a great physical therapist, and I'm going to start up with her maybe next month. Her name is Tracey Sher and she's the best. How was it for you ladies having the pelvic rehab after surgery? Painful or okay?

Alana, sorry to hear about the spasm, I get that sometimes too. Is yours triggered by a lot of physical activity? Or ever after horse-back riding? Do you ever take anything for it? Sometimes I take tylenol, but I'm not sure if that does anything. Dr. Lamvu always tried to get me to take valium for the spasms, but I really don't like how weird it makes me feel. Thanks again for the support ladies!! Cool

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Re: Questions after Vestibulectomy

Post  Alana3 on Mon Jan 28, 2013 1:59 am

I have my first pt tomorrow I'll let you know. I didn't like her but if she fixed you that's good! Stitches don't hurt coming out so relax. I have pain randomly not really with activity or not. I'll be up in Orlando soon we should meet up! Keep us updated tomorrow don't worry you're normal!

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Re: Questions after Vestibulectomy

Post  Alana3 on Mon Jan 28, 2013 2:00 am

I have my first pt tomorrow I'll let you know. I didn't like her but if she fixed you that's good! Stitches don't hurt coming out so relax. I have pain randomly not really with activity or not. I'll be up in Orlando soon we should meet up! Keep us updated tomorrow don't worry you're normal!

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Re: Questions after Vestibulectomy

Post  jen007 on Mon Jan 28, 2013 1:47 pm

I've actually never been to pt. My surgeon told me I didn't need it, but I think I would benefit from it. I'm thinking about going to pt in the summer. I had tried to go to pt in the past, but it didn't ever work out with my school schedule, I'm a full time college student. I think pt would help anyone after surgery. My muscles have been so tight for so long, it feels like I'm touching a bone instead of muscle. Dilating helps, but I feel like pt would make that completely over time. I would recommend it for sure Smile

Please keep us updated on your progress! It's nice to have another person whose had the surgery on the forum Smile

-Jen

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Re: Questions after Vestibulectomy

Post  Alana3 on Mon Jan 28, 2013 3:26 pm

Pt went well a little sore and I was still jumpy when she first touched but im going with normal since it used to hurt so bad

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Re: Questions after Vestibulectomy

Post  jenn31 on Mon Jan 28, 2013 11:25 pm

So good news, it wasn't too bad! I had all my stitches out, and it didn't really hurt. Lamvu says I'm healing well, so that is really good. I asked her about my glands, and she said they didn't cover up my glands which is also great. I know she must be right, it just seems different like dryer. Maybe it is just stress or something. All in all, I'm relieved it seems to be going better. She said it might have been yeast that casued my pain, so now I have two days of Diflucan. The only sad news is that I can't go riding for another 6 wks because she said the skin is too fragile. I miss the horses!! Crying or Very sad

But it's really worth it if I'll feel better. Alana, it would be great to meet up with you! Are you visiting friends in Orlando?

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Re: Questions after Vestibulectomy

Post  jenn31 on Mon Jan 28, 2013 11:28 pm

Forgot to ask! Jenn, sorry it didn't work with your schedule for PT. I think it does help if you ever need to go, though if you feel great no need! Smile My PT said so much of it has to do with tight muscles, or like knotting with the pelvic muscles? Alana, I bet the first day was kinda scary. How are you feeling now? How many weeks is this after your surgery? Great to have you ladies to talk to!! Very Happy

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Re: Questions after Vestibulectomy

Post  Alana3 on Tue Jan 29, 2013 11:58 am

Yes to friends. Yeah he told me after 6 weeks I could so anything I wanted I assumed that meant riding but too late I already did it and worked out and I have no pain so Meh lol well I had been to pt before so it wasn't that scary but I did get nervous it wasn't so bad didn't hurt nearly as bad as I thought it would. You'll be fine! Did you have a partial or full? Im on like 7 weeks I think I only have one bad spot but that's from muscle and it is absolutely nothing like it used to be! I can dialate with no problem ride and be myself you'll be good. I don't know why why you can't ride but listen to her. even of you can't get as lubricated as before there's still lube which works all in all it's a fair trade!

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Re: Questions after Vestibulectomy

Post  jenn31 on Fri Feb 01, 2013 2:19 am

Hi Alana!

How are you doing? Still feeling okay after pt? Yeah, I had a partial, I'm coming up on 6 wks now. I don't know why she said another 6 wks till I can ride, seems like a long time. She also said don't start with dilators yet. Weird. I'm actually bummed, because the horse I was going to lease got sold. He got a good home, I just wanted him but I've been gone for too long. Do you have your own horse? Do you show? Smile

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Re: Questions after Vestibulectomy

Post  Alana3 on Fri Feb 01, 2013 1:20 pm

Pt was fine but got a yeast infection now gerrrr at least it's treatable and not the vv coming back! Idk everyone is different I just healed really well when I went in for the yeastie he was like I ,ant believe it's only been 7 weeks this is looking so good and he showed me pics I love it you can't even tell I had anything done Smile I have a horse, had him almost 11 years and we no longer show he's my buddy I love him to death. Where do you ride in otown?

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Re: Questions after Vestibulectomy

Post  jenn31 on Sun Feb 03, 2013 6:30 pm

How was your wkend? Have fun with your friends? I know, I got so stressed with the yeast because I thought it was the VV coming back. I'm doing a course of Diflucan. I just wish it wasn't so scary, and I hate the worry about VV. My incision is starting to look a lot better, finally starting to look normal, I don't think anyone could tell. Can't wait for it to be fully healed!

I actually ride out in Clermont at Dreamcatcher Ranch. I really love it there but it's far to drive. I am thinking about finding a horse to lease and then buy, but it's hard finding just the right place. Any suggestions? Do you have your horse at your own house, or do you use another barn?

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Re: Questions after Vestibulectomy

Post  Alana3 on Sun Feb 03, 2013 8:02 pm

He's at a barn I've been with since I was 10 lol try errol equestrian but idk where you are from it. It was really nice when we went to but my horse. Yeah I know my anxiety goes nuts whenever I have anything weird going on down there her

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