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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


My story (prev and now)

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My story (prev and now)

Post  xmandi88x on Mon Apr 22, 2013 2:05 pm

Hi there,

When i was 21 i suffered with Vulvodynia, Basically my vagina was so sore and burning, my thighs and also my bum cheeks and just under them would also be very sore and would burn, i would get a gel type discharge and then every so often i would spot a little bit of blood but this would be more pinkish then when you had your period and also would from time to time get a brown discarge. i went to doctors who didnt know what was up so referred me to the gyno's. It was them who told me i had Vulvodynia and was perscribed Amitriptyline. over thext 2 years i upped my dose and reached 70mg. I changed alot of things like no perfumed shampoo / conditioner / body scrubs etc i only ever wore cotton underwear and soft clothing that wouldnt irritate my body. Within time i became cured and didnt suffer with it for nearly 2 years however the past week and half it has all come back again. I became ill last year and am currently suffering with another condition which is quite rare so not sure if the medication im on for it has triggered it or whether its just because my body is so run down. Im due back at docs tomorrow to see if i can be referred back to gyno or to get the amitriptyline back but i do know that this medication im on at the moment may not be suitable with ami. Does anyone have any tips on how to help with the burning. I am currently off work at the moment due to the other illness i have but cant believe i now i have this on top it too. I could tell something was wrong with my body over the last couple of weeks as i was feeling pins and needles, burning arms, funny feelings in my body, joints ached and the gel type discharge again (very clear discharge).

Please note that you can get better as i did im just annoyed its come back when i thought that aspect was completely in the past. x

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Post  Alana3 on Mon Apr 22, 2013 3:03 pm

Get some lidocaine from your doctor it will burn when putting it on, but it quickly numbs it. You can also get a compound of that amitryptaline (sp) and gabapentin mixed with lidocaine assuming you're in the states. You could try a warm bath with nothing in it, if anything that will relax you. What worked for me was PT she taught me how to do exercises to relieve muscle tension. Other than that it sucks!

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Re: My story (prev and now)

Post  xmandi88x on Mon Apr 22, 2013 3:14 pm

i use lidocaine already but try and use it sparingly as its only a little tube. im in the uk so not sure if i can get the cream but im at docs tomorrow see if i can be referred back to gyno. x

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Post  Sarah001 on Mon Apr 22, 2013 5:26 pm

Can I ask what the other rare condition is? You don't have to say if you don't want to I just wondered if it might be connected.
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Re: My story (prev and now)

Post  xmandi88x on Mon Apr 22, 2013 7:48 pm

i have vestibular migraines. x

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Post  Alana3 on Mon Apr 22, 2013 8:45 pm

what are vestibular migraines?

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Post  xmandi88x on Wed Apr 24, 2013 9:11 am

I have dizziness, off balance, feeling like I'm moving but I'm still, funny vision like bouncy and strained, sore eyes, headaches, neck pains, fatigue etc and then now this. X

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Post  Alana3 on Wed Apr 24, 2013 3:00 pm

Isn't that a migraine? I have that stuff too, it sucks, if it is migraines, can they do botox for you? I was considering it. There's also a supplement from vitamin shoppe I just started taking and it works called Migrerelief, I believe. If I'm misunderstanding something though disregard.

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Post  xmandi88x on Thu Apr 25, 2013 7:06 am

It is a migraine a vestibular migraine but not as easy to treat there is no cure over the counter meds shouldn't be taken for too long I've had this illness for over a year taking over the counter meds too much can actually cause re bound headaches I'm on preventative medication but it depends on the person and if it works for them I've only been on it 8 weeks so early days yet.

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Post  Alana3 on Thu Apr 25, 2013 10:45 am

Never heard of that hope luck I hope it works for you

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Post  keepdreaming on Fri Apr 26, 2013 8:24 am

Hi There

I was diagnosed with Provoked vestibulodynia two months ago but having it for a bit more than a year. The curious thing about your post is that I also have vestibular migraines but I've been having them for at least 7 years, some of the doctors I've seen think that there's a link between my Vestibular migraines and my vulvodynia, something to do with the nerves sensitization.

For the burning try lidocaine.

I hope it gets better!

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