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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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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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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


Pain only on the left side of vulva but doesn't seem to pudendal neuralgia

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Pain only on the left side of vulva but doesn't seem to pudendal neuralgia

Post  Theresa1987 on Tue Jul 12, 2016 8:31 pm

Hi all,

I've had vulvodynia for 5 years. Long story short it seems it was probably kicked off by going on the pill. Tried many treatments with no real results or I seem to get better but then the pain changes.

I found physio therapy really helpful for my vaginismus but for the last two years or so my pain is only on the left side. It hurts at the spot at 4 O'clock and then will burn in a line down on the inside of the butt cheek. It use to hurt onto the clit but now that's stopped. The pain is getting more unpredictable and worse as time goes on.

Anyone experienced anything similar? Any advice? I've tried all the usual things, botox, physio, amitriptiline, gabapentin, cymbalta, chriopractor, dillators... I've wondered if it;s hormones but I use all the compounded hormone creams and they don't seem to make a difference. Haven't tried the nerve block or surgery.

Theresa1987

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Re: Pain only on the left side of vulva but doesn't seem to pudendal neuralgia

Post  emalita on Tue Jul 12, 2016 11:53 pm

Hi Theresa1987,

I'm sorry to hear that you've been dealing with this crappy condition for so long.

Like you, my pain has varied throughout my 2+ year battle with this condition. Right now my largest complaint is only on my left side near the bottom inbetween my labia minora and majora. It mostly feels like a really sore bruise, but it can feel like burning, throbbing, prickling, and stinging (no shooting pain down my butt though). Although it is at its worst when touched, it can act up without provocation.

Sounds like you have certainly tried the most common treatments. The hormones you were on, were they bioidentical hormones? I've read that can sometimes make a difference as to whether or not someone responds to hormone therapy.

emalita

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Re: Pain only on the left side of vulva but doesn't seem to pudendal neuralgia

Post  WaahwaahUK on Wed Jul 13, 2016 11:35 am

Hi there. My pain is also now only on the left side of my vulva and labia. It was originally on both sides and up to my clitoris too. You've tried more things than I have! However, for me I've found slow (very slow) progress with physio (womens health internal physio and also osteopathy). I have definitely had set backs. Experiencing one now! However, overall I feel some small improvement over time. I'm so sorry you've had this for 5 years. How long did you have physio for? I do have suspected pudendal nerve irritation which is supposedly settling but can still be firing off for some time apparently.


Last edited by WaahwaahUK on Wed Jul 13, 2016 11:36 am; edited 1 time in total (Reason for editing : Addition)

WaahwaahUK

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Re: Pain only on the left side of vulva but doesn't seem to pudendal neuralgia

Post  Saoirse on Sat Jul 23, 2016 6:38 am

Theresa1987 wrote:Hi all,



I found physio therapy really helpful for my vaginismus but for the last two years or so my pain is only on the left side. It hurts at the spot at 4 O'clock and then will burn in a line down on the inside of the butt cheek. It use to hurt onto the clit but now that's stopped. The pain is getting more unpredictable and worse as time goes on.
surgery.

Can you ask for a MRI? I had the similar sistuation and when the doctor did MRI they found out my bartholin cyst was hidden deep under the tissue. I had it removed, it helped with the pain. Before the pain can come all the way up and down to the buttlock, but somehome I still itch constantly at the area. Still dealing with it... Sad

Saoirse

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Re: Pain only on the left side of vulva but doesn't seem to pudendal neuralgia

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