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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, …

Comments: 7

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 …

Comments: 5

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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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 …

Comments: 4

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 …

Comments: 7

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 …

Comments: 2

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 …

Comments: 10

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: 1

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: 6


Vestibulectory removes 85% of pain, Birth removes 15%

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Vestibulectory removes 85% of pain, Birth removes 15%

Post  pangea on Sat May 27, 2017 8:27 pm

I was diagnosed in 1999, at 21 years old, right when my sexual life was starting.  I'm pretty sure it started after a reaction to spermicide on a condom, which I thought was a yeast infection, so I treated with a lot of creams. It was too much for my skin. It is strange to write these words now, at 40, and revisit what was a very depressing, painful part of my life.  To get to the point, after years of trying everything under the sun and the redness and papercuts getting progressively worse, I decided to get a vestibulectomy after 10 years of VV.  The surgery removed 85% of the pain, which is a great success.  I could have sex, and for the first time enjoy it without needing a lot of alcohol to numb the pain.  After a year of good sex, it was time to make babies, I've made two!  Because of the lack of skin to stretch, I tore significantly, but that was like booster surgeries each time when getting stitched back up.  These free 'booster' surgeriges 'reorganized the skin again, and actually removed the remaining 15% of pain, and now I actually have trouble NOT orgasming.  It all seems so normal now, that I forget to terrible 10 years of my 20's.  So that's the short version, here's additional information.

Though I live in Phoenix where a vuvlar specialist lives, I opted to fly to Portland and get the surgery done by a very experienced female doctor at the teaching university there.  She has been doing these surgeries longer than most any other gyn, and I liked that she probed me gently as I feel a good surgeon should, and was a female. I kindof like that, emotionally.  Even after flight and hotel it was cheaper than doing it locally.  I stayed at a hotel there one week with my mom as I recovered

Equally important in my recovery is the associated intolerance of wheat, milk, and eggs, which if I eat for two weeks continuously will make me go down in a ball of pain on the floor after urinating and for the next 5 hours, even if I'm at a mall, I discovered.  Just like the scene with Tom Hanks in the move The Green Mile.

Well, my babies are home so I have to run! But isn't that nice to read!? My babies that I made by having sex without pain and whose birth led to an even better sex life are home!  

It took me a long time, but it gets better. Keep at it, keep researching, and it'll happen for you, too!

Be strong and stay away from negativity.

Love,

S.R.

pangea

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Re: Vestibulectory removes 85% of pain, Birth removes 15%

Post  sj17 on Tue Jul 04, 2017 10:55 pm

Hi Pangea,

Did you have a full vestiulectomy or partial? Also is your pain generalised or provoked?

sj17

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Re: Vestibulectory removes 85% of pain, Birth removes 15%

Post  Tired89 on Wed Jul 05, 2017 10:28 pm

Wonderful story! I'm so happy that this terrible journey is over and that you can have a normal life...something all of us ladies with this condition dream about. I also have the same questions as Sarah too though. I have vestibulodynia with provoked pain. It seems I've always had it. I'm curious about the outcome of surgery when the condition is like mine.
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