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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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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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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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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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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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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!

Jenn89

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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..

Jenn89

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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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