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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 …

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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 …

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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

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

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: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


Newly diagnosed, seriously down right now

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Newly diagnosed, seriously down right now

Post  ndal-trea on Tue Feb 10, 2015 2:49 am

Warning: I am going to whine a lot here.
I was diagnosed today with vulvodynia. 45 year old woman with no other health problems. I am living in a new city and went to an MD I was referred to by friends who loved him. He was very nice, but he was so matter of fact about it during the exam "I see nothing there. Does it hurt when I push here? How about there? You have vulvodynia" and then went on and on about "You are too high anxiety. You would be so much better if you just smoked a little weed. And found a loving, caring, regular sex partner. You will be fine. You just need to be held and cuddled and loved by a man who will treat you well" Honestly, thats exactly how it went. He left the room and I burst into tears, took me a full 10 minutes to be able to walk out of there. He knows nothing about my life. Just because I am single doesn't mean I need or dont have any of that. And I am NOT high anxiety. I am probably one of the most chill people he could ever meet. Friends tease me about being so calm about everything. I was anxious because I hadn't been there before and because I am in terrible constant burning searing itching pain like acid is being constantly poured on me and I haven't slept in over a MONTH.

He then prescribed triamcinolone cream, which I haven't bothered to pick up yet. I left there in absolute disbelief.
This is my third MD- It started out with horrific swelling and redness so bad you couldn't even tell what my parts were down there and all cultures have been negative. All signs of anything have since disappeared, everything looks absolutely normal. I have herpes and have for a thousand years, no outbreaks since 1999. But thats what I first thought this was, some crazy horrific outbreak unlike any I ever had. I did two weeks of acyclovir and nada, so then I went to Urgent Care (I was changing jobs and had no health insurance) Then my PCP when my insurance kicked in.
I have done everything they have told me to do- first treated for yeast with monistat. Then a diflucan.Then metronidazole for 5 days internally. Nothing. So then they say "Maybe it is tinea" and I go on lamisil for 2 1/2 weeks. Nothing. Then cortisone 1% which BURNED badly I couldn't tolerate it. Then I start google diagnosing myself and testing out other things online which I think only made things worse (lavendar oil, tea tree oil, castile soap, vaginal moisturizer washes in lieu of soap, hydrogen peroxide, coating myself with vaseline). I changed to no soap, just water. I stopped using any kind of toilet paper, just squirt water and dry with unbleached cotton cloths I cut myself. Or a hairdryer if I am home. I use a clean towel every time I bathe and I dont wash my hair in the shower anymore, thinking maybe it was an allergy to soap. I am using free and clear laundry detergent.

The only relief I get is ice packs. I dread getting my period again (due this week) because it intensifies everything. I haven't slept more than an hour or two a night in over a month now. Two days ago it just up and up intensified for no discernible reason (I have been off work for a few days now just chilling and trying to read books and sit around in loose comfy PJs)

I am honestly so depressed right now. I cant do my long walks, I can't kayak because the damned sea water burns so much, my poor dog is barely getting walked far enough. I don't want to go out or do anything anymore and I am a pretty social person. I would rather they just cut my lady parts off than to have to deal with this any longer. All day I am on the verge of tears and I am NOT a crier. Anyway, I just needed to vent to some people who would understand, because for sure my friends aren't understanding what I am going through right now and are probably tired of listening to me (how could they understand unless they experienced it too?)
Thank you for the opportunity to post and whine

ndal-trea

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Wow, you so said it

Post  OBRN2007sms on Tue Feb 10, 2015 4:43 am

Just tonight I was telling my husband, "I wish I could have a sex change operation"! I AM SO TIRED OF LIVING LIKE THIS! Some days I just want to lay in my bed I don't want to get up because I know it is going to hurt to just to walk across the room to unload the dishwasher and do the trivial things that I used to, and thank God I don't have to work fulltime because there is no way that I could. I can't believe the bullcrap that doctor told you! I don't have any advice to give on vulvar creams or treatments I am being treated for more on the inside but I am now having an outside problem lot of itching and burning and I need to call and see what he says and like you I have tried those OTC products and they don't work or they make it worse.

OBRN2007sms

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Re: Newly diagnosed, seriously down right now

Post  ndal-trea on Tue Feb 10, 2015 1:40 pm

I was up all night with ice packs and miserable, spent some time googling. I read this can be due to nerve injury? But nothing definitive. I have an old back injury from 16 years ago (but rarely bothers me anymore) and the day this started I had gone skydiving. The parachute released and I was jolted pretty bad. Which is absolutely normal (the jolt) When I got home after was when the itchies started. It then progressed to the intense burning and constant sharp pins and needles. Curious if it is related? Not even sure where to start to have that investigated. So frustrated. My work week starts today and I am dreading my day/week already. Ugggh. Thank you for the response, just knowing someone is out there that understands the misery is helpful.I can completely understand why this makes women suicidal, though I'm not there yet thank goodness.

ndal-trea

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Wow, you so said it

Post  OBRN2007sms on Tue Feb 10, 2015 3:59 pm

I don't know if you had read my story but I believe mine also started with some type of nerve damage as well with a steroid shot that I got in my hip that went wrong and if there is some way I could prove it I am going to sue! What is bad is that it is the surgeon works for the hospital that I work for but my life has been ruined!! My family wanted me to talk to a lawyer the day after the shot incident because I've never felt normal since.

OBRN2007sms

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Relief from pain after 5 years of suffering...

Post  maprmp on Fri Feb 13, 2015 4:12 pm

Hello all,

I am a firm believer in helping others and telling people of sure fire remedies or cures to their illness or sadness. I have been suffering with this embarrassing and debilitating pain for over 5 years and the only thing the doctors wanted to do was shake their heads and write yet another prescription. In my pursuit for an holistic cure, I found Dr. Asad Cheema, of Holistic Science Pain Clinic in Joliet Illinois. In just one acupressure /acupuncture treatment I felt 50% relief and started crying like a baby because for 5 years of doctors, I had not one ounce of relief. This was a 30 minute non-painful treatment at cost of $150.00. I am here to tell you all that this man has a gift for healing and I have been pain free now for over 5 years! I do go back from time to time to get a treatment just to keep myself free from any energy blockages due to stress, which I believe caused this terrible pain to come into my life in the first place. His office has a book filled with 100's of testimonials of people in all kinds of pain that have gained their life back. Please, if you are at your wits end like I was, please call the office at 815-725-7200. I promise you that you will never meet a kinder more gentle sole, who has over 20 years experience as a double board certified anesthesiologist and pain specialist. This doctor is beyond knowledgeable and mostly very understanding and is one of the few doctors out there that understands this terrible disease. I have nothing to gain from this other than the satisfaction of helping other woman going through this. I am one of you, I was dealing with this every day and it was tearing me apart. But no more, if I can help even just one woman out there escape from this pain then sharing my story has been worth it. God bless and I wish all of you good health and healing. Get your life back! It is possible! Thank You.

maprmp

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Re: Newly diagnosed, seriously down right now

Post  ndal-trea on Fri Feb 13, 2015 4:17 pm

A little too far from me, but I can almost guarantee mine is from nerve pain. I have been stretching and doing yoga every night before bed (my hips and piriformis muscles were ridiculously tight, I had no idea until I stretched!) and I had two full nights sleep. Last night I slacked and only did a half session because I was just too tired and guess what- woke up over and over again all night long miserable and in pain. I tried stretching then but it seems it was too late.

I found an acupuncturist here specializing in womens issues that had a very good yelp review about fixing vulvodynia, it is going to take awhile to get in but am going to give it a try. In the meantime, chiro and massages are scheduled and am going to start a hot yoga class to see if I can stretch deeper.

ndal-trea

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Re: Newly diagnosed, seriously down right now

Post  maprmp on Fri Feb 13, 2015 4:48 pm

ndal-trea wrote:A little too far from me, but I can almost guarantee mine is from nerve pain. I have been stretching and doing yoga every night before bed (my hips and piriformis muscles were ridiculously tight, I had no idea until I stretched!) and I had two full nights sleep. Last night I slacked and only did a half session because I was just too tired and guess what- woke up over and over again all night long miserable and in pain. I tried stretching then but it seems it was too late.

I found an acupuncturist here specializing in womens issues that had a very good yelp review about fixing vulvodynia, it is going to take awhile to get in but am going to give it a try. In the meantime, chiro and massages are scheduled and am going to start a hot yoga class to see if I can stretch deeper.

I am wishing you all the very best my friend. Just so you know, my doctor put the needles in my lower back and one in
my right ear on top.  Just thought knowing the needle placement might help your acupuncturist as well. Very Happy

maprmp

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Re: Newly diagnosed, seriously down right now

Post  meelie on Mon Feb 16, 2015 1:39 am

OBRN what do you mean the steroid shot in your hit went wrong? What on earth happened?

meelie

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OBRN

Post  OBRN2007sms on Mon Feb 16, 2015 11:19 pm

I went to the doctor for a steroid shot in my hip and instead of the doctor doing it he sent in a student; I am a very small person I only weigh 105 lbs but anyways after the procedure I got up to get dressed and then stood up to leave then collapsed to the floor, luckily the door was open and the doctor saw me lying on the floor. I was having heart palpitations from the lidocaine and had to be put on a heart monitor well after about an hour I started to feel better the doctor decided to try to have me stand up so I could go home but then realized I was totally paralyzed in my left leg because the shot went into my sciatica nerve and lidocaine also went in there and I had no feeling in there for ten hours. Well when the lidocaine wore off guess what I had vulvodynia and have since!!!!!

OBRN2007sms

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Re: Newly diagnosed, seriously down right now

Post  Milla2015a on Sat Feb 21, 2015 10:19 pm

I would like to tell how I cured myself from this awful condition. Three years ago I had this condition for about 8 months! I suffered a lot! Nothing helped, when they prescribed antidepressants, I fell asleep immediately after the first tablet for 8 hours (daytime), so I never took these tablets any more. One professor looked at the creams that were prescribed and said to me that they make more harm than good. So I decided to find the cause myself and I found it! I tried to avoid different types of foods one by one and found that my condition had caused by tea and coffee. When I stopped drinking tea and coffee at all after a week felt slightly better, pain was not so acute, after 3 months I forgot all about the disease. 3 years passed, I now drink a little bit of coffee, but only organic making it my coffee maker and feel fine. No tea, because when I try any tea, I begin feeling a very slight burning in vulvic area, so I do not even attempt to drink tea nowadays. So my advice to all who suffer it: you have tried everything, nothing has helped, you have nothing to lose if you just exclude any sort of tea or coffee from your diet for 3 months and it may help you! Wishing all of you all good health- Milla

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Re: Newly diagnosed, seriously down right now

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