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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


Cystoscopy

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Cystoscopy

Post  Kathye10 on Wed Aug 07, 2013 6:52 pm

Hey Ladies,

I saw a new Dr today who is a highly regarded Uro/Gyno. He did the Q-tip test (like I haven't a a bunch of those already) and said that my urethra had pain when pressed upon. I have never had any bladder issues with this, as far as pain goes. But I do have to push a little extra to get it all out. I have pelvic floor dysfunction and I am seeing a PT for that. I'm questioning whether or not to do the test. He says I should know if there is something wrong in that area as well. He knows I cannot afford all these procedures so he will do it for just my co-pay and write off the rest (very nice) But I want to know if 1.) This is a painful procedure 2.) Can it cause any complications?

Thank you!
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Re: Cystoscopy

Post  Alana3 on Wed Aug 07, 2013 7:05 pm

If your doctor prescribed it its probably worth it. You're knocked out typically and it might burn to pee aftrr. With any surgery there is a risk of complications. You just have to ask yourself is it worth it to find out or stay sick? Sounds like they may be testing you for IC. Look it up or ask your doctor its done everyday tho so I doubt youre at risk for many complications but there's always a chance of anything happening. If you dont have bladder pain I don't know why he'd want to do that. PFD would cause you to strain a bit too...

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Re: Cystoscopy

Post  Sarah001 on Thu Aug 08, 2013 8:31 am

Pelvic Floor Dysfunction as you know causes us to force the urine out so that's definitely caused by PFD and it also can tighten around the urethral area and cause pain there too. Alot of people who have been diagnosed with IC either rightly or wrongly find treating the pelvic floor eliminates symptoms so PFD can mimic IC. I would say ask your physio about the procedure and see if he/she thinks it's a good idea, remember more pain will tighten the pelvic floor up even more so it's not something I would rush into without a physio talk first but if they think it's a good idea then it's entirely up to you whether you go ahead or not. IC has some dramatic bladder symptoms and if you've had none except for the pushing the urine out past tight muscles I think it's unlikely you have IC or any other bladder problems for that matter. Don't feel you have to have every test done suggested if it doesn't seem right for your symptoms, you can always go back once you've dealt with the muscular side of things if you still have some symptoms.
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Re: Cystoscopy

Post  Kathye10 on Sun Aug 11, 2013 2:29 pm

I agree. I did not mention to him that I have PFD, if he took a few seconds to check maybe he would have known. I believe it is totally muscle related and since I have no burning in my urethra or bladder, it think it's best to stay away from that procedure. I don't need any "after complications" or it making matters worse. Thank you ladies for your feedback. That's a big NO on that test, lol Hope you are both feeling as good as you can Very Happy 
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Re:CYSTOSCOPY

Post  Sunflower82 on Tue Aug 20, 2013 4:15 pm

Hi,
I had two years ago when I first started this long journey. I'm going to be honest it is very uncomfortable after its a little like going for a wee with shards of glass in it! But the more you drink the more it eases off! You have to go to the loo before you leave, after about 4 hours and lots of litres of water the pain does go way. They give you a course of antibotics to take as the risk of infection is high but I never got one ! For me they didn't find anything and said it was from IC but it turned out years later this was the start of vulvodynia.

Hope this helps.

Kt

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It doesnt hurt that much

Post  Jessica11 on Wed Aug 21, 2013 12:30 pm

Ive had it done before, and it really doesnt hurt that much. If youve had alot of bladder infections before and theyve done a clean catch on you (catheter inserted into bladder to get urine sample) instead of peeing in a cup, it feels like that. When they first insert the camera, thats the worst part of it, and it only lasts a couple seconds, and they also put numbing gel in there beforehand, its not as bad as you think its gonna be, but seeing all the docotrs and nurses around me, and being told it was considered a "surgical" procedure made me really nervous:cyclops: pale but it was cool, and the whole thing only took 10 min

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pee

Post  Jessica11 on Wed Aug 21, 2013 12:35 pm

Yea, while they are looking in there, they spray water in your bladder to get a better look see at things and I peed alot after, and it hurt for a few days a little bit when I peed, thats all, really, not a big deal.
Many times people with vulvodynia, also have a condition called interstitial cystitus.
Many times, the whole vulvodynia thing starts with interstital cystitus, cuz your on tons and tons of antibiotics to get rid of repeat bladder infections, and then you end up with a yeast or bacterial infections cuz ABX kill off all the good bacteria, and its just this whole vicious, horrible, nitemare cycle.

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Re: Cystoscopy

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