Log in

I forgot my password

Latest topics
» Can you guys tell me your experiences with diflucan/Fluconazole?
Today at 1:29 am by ryn207

» So frustrating!!
Today at 1:25 am by ryn207

» Looking for suggestions or encouragement
Today at 1:19 am by ryn207

» Looking for a friend..... and new problems
Yesterday at 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 5

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

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: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1


vestibulectomy

Page 4 of 4 Previous  1, 2, 3, 4

View previous topic View next topic Go down

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.

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

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.

jen007

Posts : 151
Join date : 2012-11-05
Age : 25
Location : U.S.A

View user profile

Back to top Go down

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

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

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

jen007

Posts : 151
Join date : 2012-11-05
Age : 25
Location : U.S.A

View user profile

Back to top Go down

Re: vestibulectomy

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

Easier said then don't ughhhh lol

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

Re: vestibulectomy

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

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

jen007

Posts : 151
Join date : 2012-11-05
Age : 25
Location : U.S.A

View user profile

Back to top Go down

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)

dueywag

Posts : 4
Join date : 2013-01-10

View user profile

Back to top Go down

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

jen007

Posts : 151
Join date : 2012-11-05
Age : 25
Location : U.S.A

View user profile

Back to top Go down

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

dueywag

Posts : 4
Join date : 2013-01-10

View user profile

Back to top Go down

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!

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

Re: vestibulectomy

Post  Sponsored content


Sponsored content


Back to top Go down

Page 4 of 4 Previous  1, 2, 3, 4

View previous topic View next topic Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum