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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 …

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

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). …

Comments: 0

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


Treatment Options / Surgery

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Treatment Options / Surgery

Post  vldicker on Mon Jan 26, 2015 11:21 am

I am so happy to have found this forum. I have been suffering with vulvodyina for years…diagnosed when I was 22 and now am 25 but suffered long before the diagnosis. Over the past years it would only flare up for maybe a few days and then wouldn't bother me at all for a long time. My doctor put me on antidepressants and lidocain gel which did nothing to stop the random flare up so I stopped taking the Meds. Then in the past year it has been getting worse. In Dec 2014 it flared up and has not stopped since, so has been almost 2 months.

My vulvodyina is extremely localized to one spot. I have been to the doctors so many times that he knows exactly where to go to. Right now he has me on Gabapentin and Norco (only taken when in extreme pain). I also get injections of lidocane once a week (which I do not recommend as it only provided one day of relief for me). I have noticed that if I take AZO it helps numb the area which is nice but I don't like to take it all the time. The thing that upsets me the most about all of this is the number of meds I am taking and the damage it is doing to my liver. I am one who would prefer no meds at all.

My next treatment option is surgery. I was wondering if anyone had gotten the surgery and if it helped. According to one of my doctors I would be a perfect candidate (Not my gynecologist, so I have to bring it up with him still). I am willing to take this option if it doesn't make it worse and there is a chance I will never have to take pain meds ever again for this!!! I am a runner and a very outgoing person in a fantastic relationship and would LOVE to have my life back!

vldicker

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Re: Treatment Options / Surgery

Post  sailor_moon on Mon Jan 26, 2015 8:26 pm

You poor thing. I am 27 and I know what it's like to be dealing with this sh*the when your young. It's the worst.

If it is only in 1 spot that's a good sign that surgery would work for you, but it should be a last resort.

It has taken me almost 2 years to find a good doctor and over $10000 spent on incompetent doctors and treatments.

I finally had a proper hormone profile test done which shows I have very low estrogen, bordering between menstruation and menopause. Lack of estrogen can cause vulvodynia. ultrasound and blood test proved I also have PCOS. And my doctor suspects I have endometriosis so I am on the waiting list to have a laproscopy and hystoscopy to see if I have endo and remove it as well as seeing if anything else internal can be causing my problems. Apparently endo can settle on nerves and cause vulvodynia, and there's no fixing it until the endo is removed.

My symptoms are different to yours. I have itching and burning randomly all over. Some days are worse than others.

Yours does sound nerve related. But in saying that, the mess they have given you have not worked so it may be something else. Try to hang in there. It's so hard I know.

You really need to see a good gyne/ vulva specialist. Google the best ones near your area.
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Surgery

Post  chelseax on Thu Jan 29, 2015 4:46 pm

Hi, I'm glad you found this forum to as it is very good for people with vulvodynia as there arnt many of your friends who have this illness. My names chelsea and I'm 19 years old, I've had Vulvodynia for 3 years now, yesterday I made the biggest choice of my life and had a Vestibuloctemy! (the surgery you are talking about).
Over the last 3 years I have tried the lidocaine gel, which worked mainly during and after sex, I also tried the gabapentin, and antriptyline and nortriptyline. Not any of those antidepressants helped in the slightest, they just sent my emotions through the roof with the side effects. The surgery isn't always a cure but it is the best case of treatment known to doctors yet, online it says the success rates are quite low, but they haven't been updated for about 15 years, the success rates are now in the high 70's all the way to 100%. I had a modified fentons procedure and a Vestibuloctemy, I also had Botox injected into my muscles to stop them from spasming up everytkme something entered my vagina, I couldn't even wear a tampon without having to force it in (sorry for the grafic detail) I only had the surgery yesterday, but the pain has been at a minimum, the only trouble I have had is going for a wee. It burns but I also poor a jug of water down my lady bits as I am peeing so it doesn't burn as much. If you have any questions on the surgery feel free to message me.

Chelsea x

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Re: Surgery

Post  vldicker on Thu Jan 29, 2015 4:51 pm

Hello Chelsea,

Hopefully you have found the cure for you. I am scheduled to meet with a surgeon in a month. We will just talk about it and decide if that is the best option for me. Until then, I have injections and gabapentin to try and get me through. I am also going to see a chiropractor to see if that makes a difference.

I would be extremely interested if hearing how you are doing two or three weeks from now. Even though we are not all the same I would like to know.

vldicker

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:-)

Post  x_chelss@live.com on Thu Jan 29, 2015 7:27 pm

Yeah sure I will happily tell you about what everything is like in 2-3 weeks, at the moment everything pain wise is low just the odd sting in some places where the stitches are. I had a look in the mirror earlier to see what it looked like, and be prepared if you have the surgery because it is not a pretty sight at all! I cried, but I have been told it gets so much better once the swelling has gone down x

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Surgery.

Post  x_chelss@live.com on Sat Apr 25, 2015 10:58 pm

Hi, I just come across this post from a few months ago.
How did your meeting with the surgeon go? Did you decide to have the operation or have you found another treatment?
It's been 13 weeks since my surgery and I've started to have regular sex again. Vertically pain free! I do still have some painful tissue at the top of my vagina hole which my surgeon said he would remove if needed but I'm not struggling day to day with the pain anymore. I do have burning around my urethra still but that's suspected to be my skene glands, which can also be removed if needed but I don't feel like it causes much pain anymore.
If you still use this site it would be nice to hear from you Smile

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Re: Treatment Options / Surgery

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