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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


Has anyone had problems with micturate urge?

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Has anyone had problems with micturate urge?

Post  Lena_84 on Thu Sep 12, 2013 4:29 am

As I have painful urination, some times It seems I want to pee every hour (but I drink much), but sometimes I don't feel any urge Sad Even in the morning I don't feel any urge. Since vulvodynia has come I have pain/discomfort in pubis area. Sometimes It seems to me that signal for urination hides inside pubis or something like that,that's why I can't feel urge Sad Sometimes I think that my brain stops these signals as urination is painful for me (like hot water). When I feel urge it isn't as it was before,strange feeling. I'm scared of future worsening. Or may be it is side effects of amitriptyline/lyrica?
Has anyone had similar problems?

Lena_84

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Re: Has anyone had problems with micturate urge?

Post  zarli on Thu Sep 12, 2013 12:00 pm

I have a lot of bladder problems different to you though but my specialist tells me that vulvadynia can cause irritable bladder. I go to bed at night and straight away I'm up and down to the toilet 6 to 7 times sometimes with burning, needless to say I have had many UTI test done all negative. I take a valium if it goes on for more than three nights and it relaxes the bladder and I can get some sleep. I know one of the side affects of amil med is slow urination. Good luck

zarli

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Re: Has anyone had problems with micturate urge?

Post  EviE°Bee on Wed Oct 02, 2013 12:48 am

I'm having the same problem right now. It comes and goes but gets worse before period and after. I pee every hour on the hour, right before bed and right when I wake up. If I drink normal temp water, it's even worse. If I drink cold water it's not as bad. I can usually sleep through the night but I try and stop drinking 2 hrs before bed.

EviE°Bee

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Re: Has anyone had problems with micturate urge?

Post  EviE°Bee on Wed Oct 02, 2013 12:50 am

It really sucks and it makes me feel anxious. :-\ I'm waiting for an appt to urologist, I'll share whatever info he shares.

EviE°Bee

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Re: Has anyone had problems with micturate urge?

Post  burningturning on Wed Oct 02, 2013 8:52 am

Have you ever tried acupuncture? I've heard that acupuncture works very well for generalized unprovoked V, especially for pain during urination.

burningturning

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Re: Has anyone had problems with micturate urge?

Post  Lena_84 on Wed Oct 02, 2013 10:44 am

I tryed,but it didn't help. I think it depends on acupuncturist's experience. Mine has never treated vuvodynia. Also it depends on points which are treated. We treated pudendal nerve. May be we should treat something else and other points. I also noticed that my hips,buttocks and genital area's sensation are changed.I did't say about it to my acupuncturist. But definitely I feel in strange way while sitting or when clothes touch this area.

Lena_84

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Re: Has anyone had problems with micturate urge?

Post  burningturning on Wed Oct 02, 2013 11:33 am

Sorry to hear that acupuncture didn't work for you Sad
However, I believe it's important to find an acupunturist specialized in vulva. I've spoken with an acupuncturist about my condition but he refused to treat me stating that he has no experience in vulva. I did some research and found out there are some medical doctors (even some gynaecologists and urogynecologists) who treat vulvodynia with medical acupuncture and neural therapy. Now I'm in a different treatment so if it won't work, I'll definitely give a try to that medicial acupuncture. Because if V has something to do with nerves, neural theraphy is worth a shot.
I hope this helps you.

burningturning

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Re: Has anyone had problems with micturate urge?

Post  Lena_84 on Wed Oct 02, 2013 1:42 pm

Unfortunately, noone specializes in vulva in Russia and Japan. I was treated by neuropathologist. I think it's the best in my situation to be treated by someone who knows about nerves.We hadn't much time to try everything. This time I asked another person (who also doesn't have experience) and she answered that she will try.But I think it's better to be treated by the doctor.
Because my symptoms vary from from day or month it was difficult to say what exactly was problem.We treated just painful side, not in whole.May be it's better to treat in whole.Question 

Lena_84

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Re: Has anyone had problems with micturate urge?

Post  Alana3 on Wed Oct 02, 2013 3:45 pm

Maybe you have ic?

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Re: Has anyone had problems with micturate urge?

Post  Lena_84 on Thu Oct 03, 2013 12:46 am

Aana, now I'm thinking about dysaesthesia or paresthesia or something like that. I noticed that sometimes I have a slight burning in my face in the morning when I wake up.
May be I have problems in general? Sad 

Lena_84

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Re: Has anyone had problems with micturate urge?

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