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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: 6

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


Thanks for this forum - I am desperate.

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Thanks for this forum - I am desperate.

Post  kell on Fri May 13, 2016 6:04 pm

Hi, I'm 60 and have had painful sex for several years - its to the point where we don't even have sex...  and that sucks. Plus I understand that not 'using it'  means I am 'losing it'...  which also sucks.

I'm worried for my marriage - and I really want to have decent sex again - (decent is fine, wouldn't I love Hugely Satisfying Orgasmic Sex again - yes, but right now just fairly pain-free is fine).  I hope to hear of some interesting and helpful things from you ladies.

Basically,it appears to me my most painful part is right at the opening of the vagina - once we blast through that it doesn't "seem" like the rest of the way is that painful, but the pain from the opening is so constant during the event that it is hard to tell and very, very hard to concentrate on anything pleasurable.  It's awful.  I love my husband so much and he loves me but this is starting to create a wall between us.  Sad and depressing - never felt old in my life but now I do.

In the past I've used Replens, Astroglide, KY and Estring.... Estring was starting to work fairly well but then I had two incidences where it attached itself to my cervix -- the last time I could NOT get it out and the dear husband had to GET IT.  Tell me that wasn't horrible and embarrassing.  So not fair.  So I was done with that.

I just ordered Carlson's Key-E capsules and some YES lubricant in hopes to get things going again... I hope it's not too late.  I was also thinking of rubbing some organic coconut oil on the opening area til the products arrive.  Has anyone tried these things??

I have also gotten a compounded estrogen prescription with some progesterone pills, I believe - but balked when she said it was like $150 for the script!! (over $300 without the insurance! HIghway robbery!!) so i didn't try that. I left so discouraged.

Anyway, that's pretty much it.  I'm glad to have at least found a place where I can see others have similar situations, and that actually helps a little.

kell

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Re: Thanks for this forum - I am desperate.

Post  PainBlogger on Fri May 13, 2016 6:34 pm

I've been using Yes lubricant for my physio exercises. I've not had any irritation from it. I did try coconut oil and it stung a bit but that was a while ago when my symptoms were worse, so maybe it would be ok now. Whatever you try, try on a small area first and wait to check for any bad reaction before using more.

Trying to continue despite the pain can cause the pelvic floor muscles to tighten up and in turn exacerbate the pain. Do you have access to a physiotherapist/PT specialising in pelvic pain that your doctor could refer you to?

PainBlogger

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Re: Thanks for this forum - I am desperate.

Post  kell on Fri May 13, 2016 6:42 pm

Thanks PainBlogger for your response! I don't know about the physiotherapist - I've never even heard of it in reference to this so maybe it will be something I'll check out. It's so weird, I've suffered with this for so long, tried some things w/ varying success - yet I'd go online and find very little real or helpful information on anything!

Today I just got immersed in it all (found the terms vestibule, vulvodynia etc. for first time) - and was looking specifically for a current, used forum where women discussed this - so happy to have found this one.

kell

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Re: Thanks for this forum - I am desperate.

Post  emalita on Fri May 13, 2016 7:57 pm

I've used YES lubricant and coconut oil in the past. Unfortunately I've had a reaction to both (e.g. stinging, burning, etc.). However, prior to this whole mess starting for me, I had used both with no pain. My skin is extremely sensitive and it tends to react to mostly everything nowadays.

If your issue is more pain and less skin sensitivity, then I think you will be fine with either. I personally think coconut oil would be more gentle simply because the YES waterbased lubricant has citric acid in it, but when I was able to have sex a LONG time ago, coconut oil was a no no because my fiancé and I used condoms.

I absolutely agree with PainBlogger. Do some research on pelvic floor physical therapy, and see if that sounds like it may help your issue.

Good luck!

emalita

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Re: Thanks for this forum - I am desperate.

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