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Fri Apr 20, 2018 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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: 4

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: 3

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

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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 …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


question about the surgery

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question about the surgery

Post  riag on Thu Jan 10, 2013 2:50 am

So I'm hearing a lot about the surgery on this website. It sounds scary to me. I understand it takes away the pain and you are able to have sex again. Question, what does the surgery exactly do? Does it remove the nerve endings? When you are able to have sex again, are you able to feel pleasure.? Sorry to sound naive, but I really dont know anything about the surgery. I am truly considering it , if it is recommended to me. I am seriously considering calling Dr Goldstein. It is going to be so hard for me to pay for it though. But I am getting so depressed over this , i sometimes feel like i just dont want to live anymore.

riag

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Re: question about the surgery

Post  jen007 on Thu Jan 10, 2013 5:01 am

Riag,

I had written like a full page of information for you to read, but then somehow it go erased :[ I'm way to frustrated to re-write it, but I have written my experience on here before so what I will do is copy and paste it below. Then I will answer your particular questions. I'm so so sorry that my entry got erased!!!


Here is my story/experience with Dr. G. I've edited to answer some of your questions towards the end:


Like I said I have gone to at least 4 doctors, only because some of them had never had a patient with my problem. I was properly diagnosed about 2 years ago with PVD (provoked vestibuldynia). Sex was absolutely impossible. My current doctor at the time said that she couldn't really do much more for me, accept look for another doctor/ surgeon to pass me on to. She found me one of most highly praised surgeons who deal with vulvodynia and vestibulectomys. I was ecstatic to know that I'd be in such good hands. (Doctor Andrew Goldtein) After speaking with him over the phone he decided that I was definitely a candidate for surgery. I met with him for an examination. He explained to me that I was born with too many nerve endings in that area. He went on to tell me that he's done this surgery many times and know exactly what he is doing. He also gave me the opportunity to contact other women who have had the surgery (I didn't but it was good to know I could).

A few weeks later I had the surgery (a full vestibulectomy, which I recommend because if you only get the partial one and still have issues you're not going to want to go back for another surgery). When I went in they had me put on a gown and sit in a gyno chair. Shortly after they had me knocked out and began surgery. The surgery only takes about 45 minutes to an hour. They have you wake up and get dressed. Before you leave the surgery center or hospital they make sure you can urinate before leaving. The reason behind this is because they want to make sure you aren't too swollen or have an infection. Now I had the experience of not being able to urinate after the surgery and my nurse told me that I could still go home. Not the best advice! If you do go through with the surgery please make sure you stay until you go to the bathroom. I had gotten swollen, which is common after the surgery since they catheter you. If this happens to you just put ice near the area. The swelling will go down and you will be fine! Urinating will NOT hurt! The thing you need to be aware of is going #2...I know its gross, but I didn't really think about it until after the fact. You need to take stool softeners during the first few weeks of recovery. You don't realize all the muscles you use down there for other things and you will be sore.

I didn't have very much pain after the surgery, just a little soreness. The doctor advised me to do sitz baths everyday 3 times a day until I saw him again to keep the area clean and infection free (If you don't know what a sitz bath is, it's just a mini tub pan you put on your toilet, you fill it up with water and sit in it). You just use warm water and that's it! In addition to the sitz baths I laid in bed most of the time. You need to refrain from spreading your legs through out your whole recovery. (This means little to no walking, bending,sitting or stairs.) You can't sit directly on your bottom for some time. Most of the time you will be in bed or laying down. Also you need to ice the area constantly for the first week or 2. I used ice through out the whole period of my recovery so it would numb out the area. Also during the first 2 weeks of recovery you will be bleeding, nothing like a period flow or anything. It's very very minimal. I used those giant pads and some old towels to lay on. You can't put anything directly on the area, this includes regular pads. Everything needs to be very very clean. You can't wear underwear during the first 3 to 4 weeks. It can cause stitches to pop and the rubbing is just uncomfortable. I suggest only wearing long dresses or over sized sweat pants.

I didn't see Dr.G until 6 weeks after my surgery. Once it's been about 5 to 6 weeks you should be able to go back to normal routines, but I'd suggest taking off from work, school or any activity that doesn't involve laying down and relaxing. When I went back to see the doctor he had done the dreaded Q-tip test on me and I was stunned. I had no pain in any of my once painful areas! Just minimal pain on where skin had been removed. After surgery you must must must used dilators. They come in 5 different sizes. You need these to stretch out the area. If you have a little pain after surgery the dilators will help. He tries to sell you dilators in his office. They are made out of glass so they glide in real easy and can be sanitized better. Plastic ones are porous so they can harbor bacteria. His cost $500 which I thought was a total rip off, but they are amazing. I'd suggest buying them if you can. If you can't you can get the plastic ones online for about $45.

You also need to know that this surgery isn't for everyone. Sometimes it works and sometimes it doesn't. I'm pretty sure that no one has every been 100% cured by this surgery, but you will get very close. I'd say at this point I'm about 95-98% cured. If you know the pain then you'll understand that is a very good out come.

Answers to your questions:

Q: What does the surgery exactly do?
A: They cut out the horseshoe shaped area around your vagina- the vulva. Here is an image of the area cut out during a full vestibulectomy:

http://www.google.com/imgres?um=1&hl=en&safe=off&sa=N&tbo=d&biw=1280&bih=582&authuser=0&tbm=isch&tbnid=ACIGBFcTzIOctM:&imgrefurl=http://www.fibroid.com/vulvar-pain/&docid=DPk7GoOKnE4pJM&imgurl=http://www.fibroid.com/site/pics/850/88192/316492/433933/understanding_vulvodynia_1.jpg&w=294&h=307&ei=0EfuUMuZKIS10QHs1IGgAQ&zoom=1&iact=rc&dur=110&sig=111817685211999146650&page=1&tbnh=146&tbnw=146&start=0&ndsp=20&ved=1t:429,r:5,s:0,i:100&tx=98&ty=72


Q: Does it remove the nerve endings?
A: Yes it does.

Q: When are you able to have sex?
A: It's different for everyone. For me it took about 4 months from the surgery to attempt sex. (From July to mid November)

**My personal disclaimer...This surgery is not for everyone. In some cases it works and in some it doesn't or can make it worse. If you use an experienced doctor more than likely you will have good results (Dr. G). This surgery is a last resort. Meaning you have tried all methods of treatment which all have failed. You need to do your research before making this decision. Read up on it as much as possible. If you do meet with Dr.G he will give you names and numbers from women who have had success with him. I'd suggest taking the time to do that.

Also, if you have a husband or significant other I'd suggest bringing them in the examination room with you. I always went alone and Dr.G tends to be a little too touchy sometimes. Also he tends to make inappropriate jokes to try and lighten the mood, but really all it causes is awkward silences...Honestly I just ignored all this because he really helped almost cure me.

Here are some links you should check out. I used all of these websites to do my research:

Dr. G's website:
http://www.cvvd.org/

Dr. G's book...I'd suggest buying this, It really helped me pin point my pain:
http://www.amazon.com/When-Sex-Hurts-Womans-Banishing/dp/0738213985

This is another forum I have used. It has been dead for a while, but has a 6 year long conversation of the subject of vestibulectomies. This ultimately helped me decide that the surgery was right for me:
http://www.hisandherhealth.com/sexual-health-forums/Sexual-Pain-Disorder-and-Gyn-Topics/19505-Vestibulectomy

These are the exact instructions Dr.G had me follow during recovery:
http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CDIQFjAA&url=http%3A%2F%2Fpelvicpainnewyork.com%2Fabout-us%2FPost%2520Operative%2520Instructions%2520for%2520Vestibulectomy11_11.pdf&ei=pkvuUPGzK8WY0QGtlICYBA&usg=AFQjCNF5b5Rti6BjpP3HGEdtllfh17_gvw&sig2=9aQqW9HNnwPe4Okazop7iw&bvm=bv.1357700187,d.dmQ

Please let me know if you have any questions about surgery! I know how hard it is to find information about all of this so feel free to ask me anything!

-Jen

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Re: question about the surgery

Post  Alana3 on Thu Jan 10, 2013 2:19 pm

I had a partial done, my doctor said there's like a 10% of it coming back, and he thought it was too drastic to do the whole thing because mine was very localized. My experience was a lot like Jen's except I saw a doctor down in South Florida where I live. I have no idea what the outcome is going to be like because I'm only 5 weeks in, but I had tried everything under the sun and I was done with it. It's honestly not as horrible as you may think it sounds. The only thing that went wrong is a popped stitch, and my stitches are still in and are driving me nuts. BUt they're coming out Monday. I felt around the area and yeah the skin feels different but no pain like before so I'm hopeful right now. I say make a consult and see what whoever doc you see says- you may not even be a candidate for it. But if you are it's really not that bad just a lot of emotions riding along which sucks.

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Re: question about the surgery

Post  Alana3 on Thu Jan 10, 2013 7:20 pm

Just to add something else my doctor told me absolutely NO to dilators, so I guess that depends. Honestly, discuss this with your doctor because just like the treatments we do, the surgery is different for everyone. OMG number 2 was horrible and I couldn't for 3 days and when it happened it hurt and THAT WAS ON STOOL SOFTENERS omg ugh! Another thing was he told me not to do sitz baths, so every doc is different he just had me start doing them now. I actually had to pull myself off here and the internet and talk to my doctor directly about what was approrpiate for me! It's so different for everyone. Jen and I have been talking for a few months and our experiences have been very similar, but our doctors are having us do different things. But we seem to be healing the same way, I've been comparing myself to her lol. Let us know what you decide Smile

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Re: question about the surgery

Post  riag on Thu Jan 10, 2013 9:13 pm

i cant thank both of you enough for all your information. surgery sounds scary to me. I just call the center and they are booking mid february. Im going to talk to my husband tonight about making an appt and how to finance it.

I hear that the pain is gone after surgery and i know this is a very personal question but if they are removing nerves, are you able to feel pleasure and orgasms after surgery?

When i was on the neurontin it numbed be so much there was no pain and i was able to have sex. But i may have just as well been visiting the dentist because i felt no pleasure either. I dont want to go thru surgery and not be able to experience any pleasure. I know I am jumping the gun here, I dont even know yet if the dr is going to suggest surgery. Thank you so much for all your insight. sometimes i feel so alone with this illness. No one really understands what you are going thru unless they have it.

riag

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Re: question about the surgery

Post  Alana3 on Thu Jan 10, 2013 9:20 pm

No clue about the sex, I still have stitches in, and the pain is definetely not gone all the way after surgery so don't think you're gonna wake up do a back flip and have sex. It's a very long recovery. The pain goes away after a while, but my stitches are still in and cause v-like pain. It brought me to hysterics which jen can tell you about I was freaking out that it made me worse. But it was only temporary, I still do have pain, but it's bareable especially if they (well they said) it's temporary. But you definetely will not be pain-free after the surgery. That being said, IT WAS NOT THAT BAD or at least not as bad as I thought it would be. It hurt like hell to pee after and I could only get comfortable laying down for the first few days. It was impossible to sit and I had to kind of lean forward and balance on my elbows if I wanted to sit at all. Don't go in there thinking it's going to be a breeze because you will be miserable after. Surgery really wasn't that bad, I promise, I was freaking out about it, but it really wasn't the horror story I envisioned. I just don't want you to go in expecting to be vulvodynia pain free when it's over, and then you have pain, for the first few days I didn't have anything, but then it hit and has stayed ever since, but as my stitches have come out it's been a little better. That being said, I stopped using painkillers by the second day.

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Re: question about the surgery

Post  jen007 on Thu Jan 10, 2013 11:59 pm

Did you call for Dr.Goldstein?

I had the same question and Dr.G told me that you shouldn't loose that oh so good sensation down there after surgery. Most of those good feelings are from the G spot which is not touched during surgery. On a personal level I've still yet to feel that good feeling during sex, but only because I'm still working on it. Sex feels good/ okay at this point, but it's new to me and my boyfriend. We're trying to figure it out together Smile . If you're experienced with sex and know what you want then I think you'd be fine after.

Alana and I have had different experiences. Sadly I think she has been in more agony than I was Crying or Very sad , but I'm confident she'll be good after those awful stitches are gone. The surgery isn't even the scary part, which is what most people assume it is. The recovery is the worst...at first, but it gets better everyday! You just need to know what to do and how to do it is all, which if you do go through with it Alana and myself will be happy to guide you along the way Very Happy .

On a scale of 1-10 my pain right after I woke up/ all the anesthesia wore off was about a 3 or 4. I only really felt a pressure like feeling really. If you moved funny or are in a bumpy car that makes it like a 8 or 9. If you stay still and keep your legs together all will be good. I only took meds for about 3 or 4 days maybe. They give you a strong asprin like medication and then oxys which make you stupid, haha. I only took the oxys before bed to help me stay asleep. If I took them during the day they made me loopy. The surgery pain stopped bothering me around week 3 or week 4, but then you start to get an itchy burning feeling that is non stop which you can do nothing about. I put ice on it to numb it which did the trick. Other than that the recovery wasn't so bad. Also for me going to the bathroom was not a problem what so ever. It didn't hurt me or anything just pressure. You just need to take stool softeners.

Let is know all your questions/ concerns if you have any! It's so hard to find information online about all this. I searched the internet for weeks not able to find nearly anything. I had to learn a lot on my own, but I'm really happy to help someone else find all this stuff out Very Happy

-Jen

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Re: question about the surgery

Post  Alana3 on Fri Jan 11, 2013 4:53 pm

Ugh yeah it feels like a yeast infection I have it now it's terrible

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