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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 …

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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 …

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 …

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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 …

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 …

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Flares? What are they?

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Flares? What are they?

Post  BpCookie on Thu Apr 04, 2013 4:18 pm

Hi dahlings, I read about women having *flares* all the time but in truth I'm not sure what a flare is. My burning pain is pretty constant, with an a few hours here or there with out any pain and my pain lvls fluctuate but I have only had a hand full of days with out any pain. (except for two glorious months when Lyrica actually worked). So when you talk about flare ups, what does that mean? Do you have days, weeks or months with out pain? Did you always have flares?

Thanks Smile

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Re: Flares? What are they?

Post  ringostarr26 on Thu Apr 04, 2013 7:33 pm

I actually had 3 years pain free!! don't ask me how because i have no idea! But after being diagnosed it took two years to get in under control where i would have weeks without pain and then 3 years pain free. Now I'm in a flare and it's been awful for over a month. what a drag. Sad

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Re: Flares? What are they?

Post  sassy26 on Thu Apr 04, 2013 11:01 pm

I was first diagnosed with vulvodynia in my teens and dealt with it for about two years. It went away all by itself for the next 2 1/2 years. I was able to have pain free sex and felt like my normal self again. Just this past week ive been feeling that familiar burn and it scares me to think that it could come back again. I hope this is just a flare and that I will still be ok.

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Re: Flares? What are they?

Post  Sarah001 on Fri Apr 05, 2013 12:55 pm

I think it means different things to different women, I know some women on here have minimal pain daily and a flare is when that increases so they feel it all the time, for me it's when either my pelvis misaligns badly and increases my constant pain to a shocking level or when clothing irritates me and drastically increases pain so it's as variable as our symptoms. Didn't you say once you had a tight pelvic floor bpcookie? I seem to recall a conversation about it a while ago but I may have mixed you up with someone else!
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Re: Flares? What are they?

Post  BpCookie on Fri Apr 05, 2013 3:16 pm

Sarah hun, I have a bit of tightening on the upper left side. I went in for pelvic floor therapy one time and then my health ins. company refused to pay, so I never went back. I see women talk all the time about having back problems also, just like you had mentioned about your back being out of alignment. I've been meaning to see my chiro because my back has been horribly painful lately. I've had chronic back pain for 6 yrs and its only getting worse. My PS told me not to see my chiro just yet because I have been having different procedures done by my PS and if I do have pain relief, they want to make sure it was the procedure and not the chiro. *shrug*.

What you are saying about flares make sense. I don't have flares, not yet at least.

Ya know, since women speak of flares, I'm wondering if the vulva pain is connected to a Autoimmune Disorder. Like perhaps our body is attacking our good vulva skin cells? When I was seeing a vulva specialist and my vulva pain was resistant to all of her treatments, she wondered if I had an autoimmune disorder. Just a thought.

Have a good Friday. hugs
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sassy and ringostarr

Post  BpCookie on Fri Apr 05, 2013 3:20 pm

Hey girls, I'm so sorry about your flare. It must be so disheartening to go so long with out pain and all of a sudden *bam* the pain hits again.

Big hugs to you both
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Re: Flares? What are they?

Post  Sarah001 on Fri Apr 05, 2013 5:31 pm

Do you know what bpcookie, I think once your nerve procedures calm down if they don't work you should definitely go back to the chiro and get your alignment sorted out plus you could always buy Heal Pelvic Pain by Amy Stein which tells you how to treat your own pelvic floor so it might work out combining the two if your insurance won't cover the pelvic floor part. Obviously your nerve procedures might help and this might not be necessary and I'm crossing my fingers for you!
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Re: Flares? What are they?

Post  BpCookie on Fri Apr 05, 2013 10:22 pm

Thank you Sarah Sweetie!!!! My entire back is screwed up. I have arthritis in my neck and also a thinning disc, I have scoliosis in my back, I injured my tail bone when I was a teen, something is wrong with my hip and leg and on top of that I have a burning bush, LOL. Im a freakin mess. I most def. need to see my chiro. and soon. He is fabulous and I could really use one of those hard core back massages (actually its more like back torture massages) but I still love em.

Anyways, take care dahling. hugs
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Re: Flares? What are they?

Post  Alana3 on Fri Apr 05, 2013 10:29 pm

Have you tried acupuncture? So worth it

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Re: Flares? What are they?

Post  BpCookie on Fri Apr 05, 2013 10:56 pm

Alana hun, no I haven't tried acupuncture for the vagina thing just the back pain, but it didn't work for the back pain. So have you done it for the vagina pain? If so, how do they do it?
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Re: Flares? What are they?

Post  Alana3 on Sat Apr 06, 2013 4:05 am

For hip back shoulder and vag. Didn't Work for vag (well the vaginismus it did) but no vulvodynia.it helps me more now but it works wonders I couldn't even turn my neck the other day and now I can Smile idk my lady researched everything tho not to say your person didn't but I throw so many things at her and she def helps me if not im very relaxed at least lol

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Re: Flares? What are they?

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