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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 …

Comments: 4

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 …

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


Desperate for hope. Please help

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Desperate for hope. Please help

Post  Livethegoodlife79 on Thu Jun 15, 2017 11:04 pm

I just discovered this site and am very grateful to have found it. Although I have to admit some of the posts are freaking me out more. I'm literally at my wits ends. I can't sleep, eat or barely function on a day to day basis my anxiety is through the roof because of this. I really need some words of encouragement if anyone can help me see a glimmer of light at the end of the tunnel.
Background:
I have yet to be officially diagnosed but over the past 4 months I've been to multiple doctors and they all keep dismissing me. I've been told I have eczema or some doctors won't even examin me they just write a Rx for yeast treatment.
Approx 4 months ago I took Plan B. Since then it's been a tornado of random vaginal issues. A few days after taking plan B my vagina swelled up and burned so bad. I thought it was a yeast infection so I treated it like such. It didn't help. I went to a dr who didn't examin me and prescribed more yeast treatment. Still no help. I went to my family doctor who examined me and diagnosed it as vaginal eczema. Prescribed a hydrocortisone ointment. A few days later I was back to normal. I was sexually active and had no issues. Then I got my period and 2 days after it ended I got bacterial vaginosis. Was prescribed antibiotics which cleared it up but I started to show signs of a yeast infection so I took a yeast treatment. 2 days later my vagina is burning again. Went back to my doctor and he referred me to a gynaecologist (still waiting for that appointment) and told me to keep using the hydrocortisone ointment.
Fast forward to today and I'm on week 3 of constant burning but no redness or inflammation. Hydrocortisone ointment is doing nothing so I stopped that 2 days ago. During these 3 weeks I had my period and no relief. I went to a walk in clinic and they checked me but couldn't even see any redness or anything.
I have my gynaecologist appointment in 4 days (seems like a lifetime away). Because I haven't been able to get answers from doctors I've resorted to looking online and this is the closest I can find to match my symptoms.
I've been tested for stds-all negative.
I've changed my laundry soap to un scented etc
Changed my diet to remove dairy and egg and gluten
I have celiac-not sure if this is a terrible side effect that comes with it.
I realize my suffering is short in comparison to some of you on here but I can't live like this. I just starting seeing a guy and I can't even tell him what's wrong. I don't know if I should break things off because if this is how I'm going to be for the rest of my life I can't expect him to stay with me.
I can't imagine going weeks or months or more trying to find the best treatment that only lessens the pain and never having a cure or break from this. Providing I even get a diagnosis.
Please tell me how to function through life like this Sad
I live in Winnipeg, Manitoba Canada and I'm frantically searching online for local medical resources or support groups and there's literally nothing. Im on a tight budget so travelling for medical purposes or trying natural alternatives that aren't covered just aren't an option for me.
Please, I need some words of encouragement.

Thank you

Livethegoodlife79

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Re: Desperate for hope. Please help

Post  mary jane on Fri Jun 16, 2017 1:08 pm

Hey, hang in there...

Don't get the impression that Vulvodynia is incurable and forever, each person is different and I know of lots of women who got better. You probably don't have vulvodynia, just an allergic reaction

So, I am not a doctor but to me, it sounds like that Plan B pill gave you an allergic reaction of some sort. Try to not resort to it again, I used it a lot in the past and ended up with adult acne and PCOS. (they're both under control btw).

The best solution at the moment for you is to
1. First of all, calm down. Anxiety to the extreme can only make you feel worse, not better. Did you know anxiety can even cause neurological symptoms? I did this mistake in the past and it didn't help my situation.
2. Try some over the counter antihystamines, there's one called Atarax, it treats anxiety and allergies.
3. Try and get some over the counter lidocaine gel like instillagel for the area, it will soothe it.
4. You might need a few days to let the area recover, you have been throwing everything at it so of course it's not "happy".

Least of all, relax!
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Re: Desperate for hope. Please help

Post  mary jane on Fri Jun 16, 2017 1:10 pm

You're catastrophic right now. Never mind what the guy thinks, focus on healing yourself and then you can worry about him. He can wait for all you care!
No, it's not for life., Not even vulvodynia is for life. most women get better
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Re: Desperate for hope. Please help

Post  Livethegoodlife79 on Sat Jun 17, 2017 12:31 am

Thank you so much for your kind words Mary Jane. I actually had a complete break down this morning and drove myself to the hospital. They did some blood tests for infection/vitamin deficiencies etc but they all came back normal. I should be happy for healthy results (which I am) but I'm still very frustrated not getting any answers. I have to say that's the most anyone's actually assessed me so far (blood test to rule things out) so I'm thankful for that.
It's frustrating getting the run around from doctors and long wait times for appointments. I'm trying to do my own research but it's a catch 22 because I'm reading all these terrible things (and good) but the bad is obviously what sticks. I feel like I'm becoming a hypochondriac or like I'm losing my mind. I was prescribed some pretty strong pain killers by the doctor this morning so I'm going to try those and hopefully I'm able to relax without having to think about the pain.
I wish there were women who lived closer to me that were going through this. It's so hard not having anyone to talk to. So glad I found this site and I'm so grateful that you replied with calming and encouraging words Mary Jane Smile
Thank you to anyone reading this for letting me vent.

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Re: Desperate for hope. Please help

Post  mary jane on Sat Jun 17, 2017 8:42 am

We have a great subforum here in success Stories. If you go through them, you can see that many improve and recover

all the best
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This might help

Post  EverythingIsDifferentNow on Sun Jun 25, 2017 10:39 pm

Livethegoodlife79 wrote:I just discovered this site and am very grateful to have found it. Although I have to admit some of the posts are freaking me out more. I'm literally at my wits ends. I can't sleep, eat or barely function on a day to day basis my anxiety is through the roof because of this. I really need some words of encouragement if anyone can help me see a glimmer of light at the end of the tunnel.
Background:
I have yet to be officially diagnosed but over the past 4 months I've been to multiple doctors and they all keep dismissing me. I've been told I have eczema or some doctors won't even examin me they just write a Rx for yeast treatment.
Approx 4 months ago I took Plan B. Since then it's been a tornado of random vaginal issues. A few days after taking plan B my vagina swelled up and burned so bad. I thought it was a yeast infection so I treated it like such. It didn't help. I went to a dr who didn't examin me and prescribed more yeast treatment. Still no help. I went to my family doctor who examined me and diagnosed it as vaginal eczema. Prescribed a hydrocortisone ointment. A few days later I was back to normal. I was sexually active and had no issues. Then I got my period and 2 days after it ended I got bacterial vaginosis. Was prescribed antibiotics which cleared it up but I started to show signs of a yeast infection so I took a yeast treatment. 2 days later my vagina is burning again. Went back to my doctor and he referred me to a gynaecologist (still waiting for that appointment) and told me to keep using the hydrocortisone ointment.
Fast forward to today and I'm on week 3 of constant burning but no redness or inflammation. Hydrocortisone ointment is doing nothing so I stopped that 2 days ago. During these 3 weeks I had my period and no relief. I went to a walk in clinic and they checked me but couldn't even see any redness or anything.
I have my gynaecologist appointment in 4 days (seems like a lifetime away). Because I haven't been able to get answers from doctors I've resorted to looking online and this is the closest I can find to match my symptoms.
I've been tested for stds-all negative.
I've changed my laundry soap to un scented etc
Changed my diet to remove dairy and egg and gluten
I have celiac-not sure if this is a terrible side effect that comes with it.
I realize my suffering is short in comparison to some of you on here but I can't live like this. I just starting seeing a guy and I can't even tell him what's wrong. I don't know if I should break things off because if this is how I'm going to be for the rest of my life I can't expect him to stay with me.
I can't imagine going weeks or months or more trying to find the best treatment that only lessens the pain and never having a cure or break from this. Providing I even get a diagnosis.
Please tell me how to function through life like this Sad
I live in Winnipeg, Manitoba Canada and I'm frantically searching online for local medical resources or support groups and there's literally nothing. Im on a tight budget so travelling for medical purposes or trying natural alternatives that aren't covered just aren't an option for me.
Please, I need some words of encouragement.

Thank you


Hi there, I hope you're doing okay. This might help. I'm no doctor, but I believe your body is in a huge state of imbalance. You said you have ezcema. Ezcema is an autoimmune illness, which inevitably means there's toxicity in your liver (possibly gallstsones). I know countless of people, especially one guy who had a horrific case of ezcema, who tried liver flushes and healed 90%+ of their skin conditions including ezcema. You can't even tell he has ezcema, and now he works at one of the finest restaurants catering to people Very Happy You tried birth control, and this threw you off because your hormones were already in a state of imbalance prior to even trying it. This means there's something wrong with your thyroid. Don't worry, this is more common than you think. Sooo many people have this it's insane, actually. You have celiac, this means you have leaky gut syndrome. Your gut is in a condition where too much bad bacteria has hosted the area, and there's not enough good bacteria. Try bringing your body back to balance by 1.) maybe reading my posts lol 2.) probiotics/prebiotics to restore your gut flora 3.) liver flushes will immensely help you 4.) coffee enemas 5.) remove gut irritating foods. follow the AIP protocol. There's actually a lot more than this but this is a basis that will make a huge improvement on your health if you actually look into and pursue it. I recommend doing as much research as you can. That's how I got cured - I researched everyday almost every second. Hope you see this and hope this helps sunny

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Re: Desperate for hope. Please help

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