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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

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 …

Comments: 4

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 …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

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: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

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 …

Comments: 0


One year with VV/ Where my pain is now

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One year with VV/ Where my pain is now

Post  mars215 on Fri Aug 24, 2012 1:33 am

Hi all,

My name is Mars and I was diagnosed with VV/IC/and Pelvic Floor Dysfunction about a year ago... I've been living with the symptoms for about 18 months... but I'm glad to say that my pain has gotten A LOT better. I hope this story gives some of you some comfort...

About 18 months ago, I contracted a UTI that wouldn't go away. My primary doctor gave me 3 rounds of antibiotics... they made me feel sick and even though my cultures would turn up negative after, my body didn't really feel the same. The pain started in my left pelvic area, kind of by my waist... I wasn't sure what it was and when I would go to my doctor, she didn't really know how to deal with it... I noticed that the pain was worst after eating food or drinking (anything). At one point, I felt pain following a drink of water, and the pain actually followed where the water was going. Weird. Anyways, my doc finally referred me to a urologist and it was there that I got my trio of diagnoses. At that time, I had provoked VV... so I didn't notice the pain unless there was contact. But a month later, I started feeling a burning/stinging sensation down there and I thought I had UTIs again... the cultures were always negative, and thank God my uro didn't prescribe antibiotics until she received the results of the cultures. The pain was worse after eating anything acidic...stress... sitting for long periods (which is tough bc i'm a student)...any kind of sexual activity (even just being aroused)... tight clothes... and before/during my period. I would say that in the beginning, i would be in pain for 75% of the day... everyday....the worst being a level 9/10... the best being a 4...

I started treatment in November; first, a topical cream called traumeel that helped with inflammation and pain. A few weeks after traumeel, i started on vaginal valium suppositories. These changed everything. They targeted my highly tight and wound up muscles down there. I was a little bit apprehensive about the valium, but it gave me such relief and i found my pain decreasing significantly. At the end of december, I started pelvic floor physical therapy... basically, imagine a clam tightly shut... that was my hoohaa... the pt helped me to relax and re-train my muscles so that i could relax them when i felt them tightening up. my muscles and tissues started improving... they weren't overly tight all the time, so the quality of the tissue got better and i think that helped with the pain. When i wasn't with my pt, i was using dilators at home, to help stretch and exercise the muscles... i also worked out my core muscles (everything is connected, ya know?) at pt and at home.

I completed my pt in about 4 months (10 sessions?)... and right around the same time, my uro decreased my valium from every night to every other night... a month later, she decreased it again to every 2 nights... and now, i only use them as needed...maybe once a week. At one point, i was getting trigger point injections of traumeel... these were really painful (for about 5 seconds) but they definitely brought relief... my insurance stopped covering them though, so i haven't had them done in a while.

Physically, i feel much better... i go days without having a flare... and the worst is still what i described above (stress, period, sitting)... but i've been able to manage the pain and my own reactions to it. I'm not sure if i will ever be 100% but i would say i am at about 85% and very thankful... Mentally, it was super difficult and I lost my sense of self, self-esteem.... self-confidence in my body (this issue deserves it's own post)... but i am slowly starting to find healing and beauty again. I gained a lot of weight throughout this whole ordeal, but I recently made it a goal to lose it... i didn't want to punish my body... i wanted to nurture it back to health... so i started yoga about 8 months ago, and not only has it helped me become stronger and leaner, it has also helped me manage my stress and anxiety. i HIGHLY recommend doing a gentle, restorative yoga to help with VV.

So here I am, about a year since I was diagnosed... I have come a long way with my body... first HATING IT... then learning about it.... soon understanding it... and now, appreciating it (it's not perfect, but it's mine!). I know that the treatments I mentioned above may not work for everyone... but i'm hopeful that there will be something out there to give you relief... I think the number one thing is finding it in yourself not to hate your body... being able to make peace with the pain... and being able to find a way to manage your life with VV... each day, i try not to envy other people who have normal hoohaas... i try not to be angry at my body when i'm in pain... and i try not to bring myself down...

I hope this post helps... feel free to message me or ask questions... take care everybody <3

mars

mars215

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Join date : 2011-11-10
Location : Philadelphia, PA, USA

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Re: One year with VV/ Where my pain is now

Post  Loulou on Sun Aug 26, 2012 11:56 am

Hi Mars

Thanks for sharing your story - its great to hear some good news!

I totally agree with you about doing gentle yoga. I have found it really helpful in getting my pain down and it makes me feel better overall, as if my body is getting stronger and therefore better able to help heal itself. And like you, making friends with my body again just makes me feel happier.

Hope your progress continues.
x

Loulou

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Re: One year with VV/ Where my pain is now

Post  mars215 on Sun Sep 09, 2012 12:29 am

Thanks, Loulou. Wishing u all the best Smile

mars215

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Re: One year with VV/ Where my pain is now

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