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» Vestibulectomy today and no pain
Today at 3:28 pm by Dsrt16

» vestibulectomy success
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» MY STORY & Vestibulectomy 2/8/17
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» Pain aftee vestibulectimy
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» Freaking out because I don't think surgery worked HELP!!!!
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» Vulvodynia help
Wed Nov 15, 2017 1:04 pm by ekaterina1996

» FACEBOOK VULVODYNIA SUPPORT GROUP (SECRET)
Tue Nov 14, 2017 9:53 pm by Dsrt16

» Needing some reassurance
Sun Nov 12, 2017 3:04 pm by Nicmay

» Vulvodynia burning mouth and bladder discomfort
Fri Nov 10, 2017 7:26 pm by Zbrown

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 0

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


New here/Advice about life with vulvodynia

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New here/Advice about life with vulvodynia

Post  blueberryrabbit on Mon Sep 08, 2014 3:06 pm

I haven't been on a website forum in years, but this is probably the only way I can really talk about this.

I'm 23, and I've had vulvodynia/vestibular pain/pelvic floor dysfunction since I was 15 (I've probably had it for much longer than that and don't really remember). I also have PTSD from being in a sexually and emotionally violent relationship for 5 years. I can have sex, but not without pain, and having flashbacks/panic attacks after awhile. I have moments where I can't walk, or really think about anything other than my pain. Bike riding, sitting in really uncomfortable chairs, or anything that requires a lot of pressure on my pelvic muscles is impossible.

I can't afford to go to a physical therapist (who can only be seen once every 6 months anyways- my insurance is funny like that), and medications such as Gabapentin make me sick. So all I can really do is find strategies to deal with my pain. I squat when I pee to prevent anything touching down there, and I try not to wear pants/underwear that prevents me from "breathing down there", haha. Ice directly on my vestibule helps when I'm in pain, but I feel embarrassed bringing ice with me to the bathroom when I'm not home.

I'm frustrated that I have to live with a pain condition, but the most I can do is try to accept it. I'm extremely worried that I'll never be in a relationship with someone who understands the physical and emotional intensity that I deal with. I've tried to explain my condition to other women, especially those of my friends who are "sex advocates", but they don't really understand that it exists anyways. I feel completely alone, and I don't want to acknowledge my sexuality, because I've given up ever really having one without excruciating in mental and physical pain.

Smile I appreciate you reading this and I'm hoping you all find peace and healing.

blueberryrabbit

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Re: New here/Advice about life with vulvodynia

Post  RoseKa on Mon Sep 08, 2014 6:57 pm

Hi blueberryrabbit

Im sorry to hear what you are going through and while so young sweety! I hope you will get a lot of support and understanding from the members here. I know that this condition is a living hell at its worst, ive been there for a long time... im now on a journey to heal it one day at a time without medications then i found the other thread on here called "Pain Free With Dr Robert Morse" and have since been helped a lot for free on that thread by a generous and wise young man who has answered all my questions so far and steered me in the right direction. Im now in much less pain, i can put warm water on the vulvar without the pain increasing (it used to make it burn and sting so badly i would go into a fetal position and cry). Other benefits are that i sleep better at night and my high blood pressure is almost within a healthy range.... Me and my hubby think that if it continues to get better at this rate we might be able to have sex again soon, after a long time without it because i eventually couldnt stand the pain it caused

It is so sad to me that someone so young has to deal with this. I hope you can maybe read that whole thread. Maybe it will help. I dont think we have to live with this if we dont want to and choose to really do something about it... So far my experience is that we just have to do what it takes to help the body heal it and have patience while it takes care of the rest http://vulvodyniasupport.forumotion.net/t622-pain-free-with-dr-robert-morse

RoseKa

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Re: New here/Advice about life with vulvodynia

Post  sailor_moon on Mon Sep 15, 2014 11:41 am

Oh you poor poor thing. I so feel for you.

I am only a couple of years older than you. I know how hard it is being a young person with this nightmare of a condition.

Can I ask what type of symptoms you experience? And do you have any other symptoms besides vulvodynia and your mental state?

I have only just gotten onto a great doctor after a year and a half...and after 12 other doctors telling me it was all in my head and needed antidepressants. It turns out I have an EXTREMELY rare hormone imbalance, one that goes undetected unless you pay to get a special blood test done. I am in the midst of other tests to put the pieces of the puzzle together so I can't say I'm cured yet, but its a great start after a year and a half, and $8000 down the drain on treatment that hasn't worked.

Have you seen a Gynecologist that specialises in vulva disorders?


Don't give up. Sad no one should have to live with this.

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Re: New here/Advice about life with vulvodynia

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