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» Honey decreased my pain considerably!
Yesterday at 12:53 pm by mhhh

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Yesterday at 1:15 am by MDias

» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

» Hi girls! New in this forum
Fri Jul 13, 2018 2:31 pm by Gaby

» Newbie and feeling helpless
Thu Jul 12, 2018 6:35 pm by emalita

» Using dilators
Tue Jul 10, 2018 12:27 am by srbry

» Hello. In Need of Advice, Please and Thank You. Long Read.
Sun Jul 08, 2018 3:58 am by cg1991

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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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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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 1

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 5

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.

Comments: 1

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 …

Comments: 0

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

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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I got the surgery!

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I got the surgery!

Post  tandaschroeder on Tue Jul 16, 2013 9:05 pm

Hey everyone! I just want to say that I was where each of you are right now. I wanted to give up. I cried every single day from the pain. I couldn't even be intimate with my husband.

3 weeks ago, I got the surgery. I can already tell a massive difference. I can't have sex for a few more months but wanted to ask those who have had surgery how big of a success it was & if penetration worked!

As goes for my doctor, he is amazing. His name is Dr. Watts. He's located in Salt Lake City, utah. Women from all over the country fly to get he surgery done. He does a ton of them, & even does them in his office to cut costs for those who can't afford it. He's so sensitive e to your needs & cares about helping you get better.

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surgery?

Post  Jenn89 on Mon Aug 19, 2013 1:00 am

I've seen a few posts about a "surgery." My doctors have not recommended nor mentioned any sort of surgery. The only surgery I've had was a hymenectomy and that was a trigger for my vulvodynia. What is this all about? Can someone explain it? Thanks!

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Re: I got the surgery!

Post  Alana3 on Mon Aug 19, 2013 1:31 am

Yes! I got it! They basically remove your vestibule hence "vestibulectomy". They take away the painful parts. Unfortunately, its only recommended for certain cases. Usually if its provoked localized vulvodynia. Its usually only done as a last resort they will try other treatments before they do that on you. It took me 5 years and a lot of frustration before it was even an option and even then they made me do other treatments first before I said I've had enough. Where are you from? Smile

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 1:34 am

I'm from Mass. My doctors have never talked about ANY sort of surgery. What does provoked localized vulvodynia mean? I know it might seem kind of dumb, but I've basically been in denial... doing the therapies and such, but not LEARNING about the condition, so I don't understand some of the things people are posting about

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Re: I got the surgery!

Post  Alana3 on Mon Aug 19, 2013 1:38 am

It means that it is painful when touched (provoked) and in one spot (localized). There is general unprovoked which is pretty much everywhere and all the time pain from what I understand. Have you tried going to Dr. Goldstein? Hes in New York and supposedly really good at what he does. I felt lost too when I first got diagnosed but you learn quick for your own sanity really.

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 1:42 am

Alana3 wrote:It means that it is painful when touched (provoked) and in one spot (localized). There is general unprovoked which is pretty much everywhere and all the time pain from what I understand. Have you tried going to Dr. Goldstein? Hes in New York and supposedly really good at what he does. I felt lost too when I first got diagnosed but you learn quick for your own sanity really.
So I suppose I would fall under the provoked localized category. I can pinpoint pretty much exactly where it hurts, but it only hurts if I'm sitting funny - which can put pressure on the spots, or if it's touched.

I have not even heard of Dr. Goldstein.. I see a specialist and a physical therapist right now, but I feel like I've tried so many methods and none of them seem to be working. My doctor insists I try one specific PT, but she's really far from me, and does not accept insurance. I'm 23, and I don't have a very good paying job, so I can't afford it..

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Re: I got the surgery!

Post  Alana3 on Mon Aug 19, 2013 1:57 am

Hmmmm yeah I'm 27 and my parents help me with medical it's just awful and I have endometriosis too yuck. I wouldn't go straight toward surgery until you've literally tried everything. My pain was thank god only with sex but it was awful and traumatic. No treatments helped until they did surgery but its a lot to think about. I will say it was easy but it was mentally taxing if that makes sense.

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 2:00 am

makes sense. Just the thought of it is nerve wracking! I'm looking it up now though, and I'm not good with anatomy, but it looks like what they cut out, isn't where I feel my pain. But I'm not sure. I'll bring it up to my PT next week anyway just so it's out there and to see what she thinks.

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Re: I got the surgery!

Post  Alana3 on Mon Aug 19, 2013 2:02 am

Where's your pain?

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 2:11 am

I don't know how to explain it... It's right at the opening towards the bottom (or I suppose it would be the back..) so it hurts sometimes when I sit.. but more-so when something is touching it like a tampon, or my dilators. It seems like they take out a bunch of skin that is NOT painful for me.

I suppose if you picture a clock, I feel pain from 8-4 right at my opening.

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 2:14 am

It looks like they take out a lot of the tissue around the opening. Like they take away from the labia almost? Like I said, I'm horrible with anatomy so I don't really know what I'm saying, but my pain is just RIGHT in that circle.. and they take out all this extra surrounding skin.

I was going to post a jpg from Paint to show what I meant, but I can't get it to work.

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Re: I got the surgery!

Post  Alana3 on Mon Aug 19, 2013 2:38 am

No they take out the vestibule not the labia you can hardly tell anything was done

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 3:10 am

Hmm I don't know. I'm gonna mention it to my physical therapist at my next appointment just to see what she says. I'm not looking for a definite answer, but it would be nice to just communicate about it with her to see what she thinks.

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Re: I got the surgery!

Post  Alana3 on Mon Aug 19, 2013 12:43 pm

Yup you never know

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Re: I got the surgery!

Post  tandaschroeder on Mon Aug 19, 2013 9:46 pm

Jenn89 wrote:I don't know how to explain it... It's right at the opening towards the bottom (or I suppose it would be the back..) so it hurts sometimes when I sit.. but more-so when something is touching it like a tampon, or my dilators. It seems like they take out a bunch of skin that is NOT painful for me.

I suppose if you picture a clock, I feel pain from 8-4 right at my opening.
Sorry girls! I just barely saw that you replied to my original comment. I just want you to know you're not alone. That's for sure. But on the bright side, the way you're explaining things is exactly what I had. I had the pain for a year and a half before I finally got fixed. I saw many doctors and all of them told me I didn't need any kind of surgery because, well, most doctors don't know a lot about it. My doctor said he had people contact him from all around the country. He does many surgeries and truly is AMAZING. He's located in Salt Lake City, Utah. Like Alana said, I would definitely try everything before you jump into surgery. I tried literally everything and nothing worked until I got surgery. It was the best decision I ever made. And if I could give one thing of advice, it would be to not worry about the cost. Because if your condition is as bad as mine was, I would literally be paying it off the rest of my life to be pain-free. If you have any questions, please feel free to ask!!

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 10:11 pm

What kind of things did you try before choosing the surgery? I feel like I've tried it all. She has no new recommendations for me when I go in there anymore. She just tells me to keep using the halobetasol and lidocaine or to go see this very expensive PT that's far away from me

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Re: I got the surgery!

Post  tandaschroeder on Mon Aug 19, 2013 10:28 pm

Jenn89 wrote:What kind of things did you try before choosing the surgery? I feel like I've tried it all. She has no new recommendations for me when I go in there anymore. She just tells me to keep using the halobetasol and lidocaine or to go see this very expensive PT that's far away from me
I tried all types of estrogen cream, physical therapy, exercises, and a lot of medications. There aren't many doctors who know what they're talking about & it sort of sounds like your doctor is one of those. I can give you my doctor's phone # and maybe you can talk to his nurse and tell them you live in another state but have heard things about him. He might have options. But it's hard when he has to SEE you. It all comes down to what you're willing to do to fix it. Because it can be expensive, it can cost an arm & a leg, but if it's worth it to become completely pain-free to you, then you should do it!

The doc is Dr Watts and is phone number is (801) 268-6811. He also has a fabulous nurse named Brooke who talked to me about it on the phone a few times.

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 10:44 pm

Hmm maybe I'll try it. Everyone here says my doc & PT are great... But I've had no results in over 5 years. Close to 7

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Re: I got the surgery!

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