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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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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: 9

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 …

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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


New here, my story and looking for advice

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New here, my story and looking for advice

Post  rachiecakes on Wed Apr 26, 2017 9:02 am

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching and burning never subsided and since then I've had almost...a dozen negative swabs that show no sign of infection. I don't have redness, swelling or abnormal discharge...my vagina looks...completely totally normal. Unfortunately as you can imagine - the pain, burning and sometimes itch has never subsided. I have periods of relief, periods of mild irritation and sometimes times of terrible pain that makes it hard to walk. The pain is all over - not just my vestibule. Some days my anal area is so sore, around my clitoris and labia.. even my pubic hair hurts. Other times I feel almost normal and sex is normal etc. Sometimes it feels like I have a sunburn - it feels like the skin is so dry (even though it's NOT and theres no visible issues and I'm covered in coconut oil)

Again I get swabbed when I'm feeling good - all clear. I get swabbed when I'm in terrible pain - all clear.

The gynecologist I saw said "this will go away on it's own" but sometimes the pain is terrible!

I've done tons and tons of vulvodynia research and it does seem like all signs point to vulvodynia...but a lot of research says generalized vulvodynia happens more with older women. I already have IC so is my pain less likely to go away on its own? Has anyone had a similar story - or any helpful tips? I've changed all soaps, use coconut oil, wash with emollient etc. all those first line options. I've been researching meds but sometimes it all feels very hopeless. If I go on meds do I have to stay on them forever?

Thanks Smile

rachiecakes

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Re: New here, my story and looking for advice

Post  fairlight10 on Wed Apr 26, 2017 4:19 pm

I would stop all lotions and potions in that area firstly. I have been on nortriptyline 20mgs for 5 years.I have tried to drop to 10mgs but I get irritation start up again. 20mgs keeps me comfortable and sane. If I have to take it for the rest of my life then, I will. I could not go back to that pain again. Vulvodynia can affect the urethra as well as the other areas you have experienced this condition. It can affect females of all ages. Women who suffer fibromyalgia, migraine, chronic fatigue syndrome, irritable bowel, intersistial cystitis are likely to suffer with vulvodynia. All these conditions can be helped with low dose antidepressants. I hope this has been a help.

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Re: New here, my story and looking for advice

Post  PainBlogger on Wed Apr 26, 2017 8:33 pm

If you go on meds and find they work, you can always try coming off them after a period of time. The meds may break the pain cycle so not be needed forever. I've had good results with duloxetine. You can read my pain background here http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement to save me retyping. Smile

I really understand your frustration. It really is a horrible problem to deal with. But people do get better.

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Re: New here, my story and looking for advice

Post  Hatty on Fri Apr 28, 2017 2:43 pm

Has anyone tried Gabapetin for pain?

Hatty

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Re: New here, my story and looking for advice

Post  mary jane on Thu May 11, 2017 4:40 pm

sounds like the nerves are irritated. You could go on a low dose of ami or nortriptyline for a period of time and it should subside. It takes at least 4 weeks for it to work..for me it took 3 months almost but the symptoms dissapeared
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Re: New here, my story and looking for advice

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