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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 …

Comments: 0

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


Curing the Incurable. VLSC now only have Vulvodynia but 75% improved

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Curing the Incurable. VLSC now only have Vulvodynia but 75% improved

Post  BpCookie on Thu Mar 02, 2017 3:43 pm

Hello all my darling ladies, I was diagnosed with Vulva Lichen Simplex Chronicus over 5 yrs ago (I don't even keep count anymore). I was told that there was no cure for VLSC but it could be treated. All the treatments failed and year after year my pain got worse. I was stuck in bed most of the time, crying and just wanting to die. The burning pain was constant, I walked like I had just gotten off a horse because even my thighs rubbing together caused pain, I had to sleep lying on my back with my legs spread apart and I was constantly sitting on an ice pack. After years of failed treatments, appointments with different Dr.s and never ending research, I ran across a gynecologist who specialized in.........everything to do with the vagina. He wasn't afraid to treat my VLSC aggressively and he wasted no time in doing so. He did two surgeries, one was to clear out the Hymen Crucibles and the second surgery was to remove skin from the areas that were the most painful. Then he did painful alcohol injections to deaden the nerve endings and the last things he did was to put me on Lyrica. OMG!!! Girls, I feel like a normal woman now. I still have pain and I still have to take Lyrica twice a day but my pain has been cut down by 75%. Some days I don't have pain at all. Also, the last test they did came back NORMAL. My VLSC was GONE. I am now left with Vulvodynia but I can live with that since my pain level is so low now. I can even have sex now. I rub on some Lidocaine 5% which numbs the area and then I inject some KY Jelly into the vagina using a syringe to make sure I am good and lubed and *walla* I can have sex. My life is back girl!!!

My advice to you is to due research, never stop trying to find a Dr. who can help you, trust me, there is one out there some where you just have to them and try every treatment thats thrown at you.

You may want to try Lyrica and Lidocaine 5% ointment.

I wish you all the very best luck. Hang in there.

hugs
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Re: Curing the Incurable. VLSC now only have Vulvodynia but 75% improved

Post  mary jane on Tue Apr 25, 2017 3:13 pm

Amazing, happy for you !!!!
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Doctor's Name

Post  amyhp on Tue May 02, 2017 3:44 pm

Bpcookie,

Could you PM me the name of the doctor that did the alcohol injections to deaden the nerve endings?

Thanks,
Amy

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Re: Curing the Incurable. VLSC now only have Vulvodynia but 75% improved

Post  sj17 on Tue May 16, 2017 4:07 pm

Same for me.thanks

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Re: Curing the Incurable. VLSC now only have Vulvodynia but 75% improved

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