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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 …

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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 …

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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 …

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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 …

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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 …

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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 …

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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


Sex problems confusion with Vulvodynia

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Sex problems confusion with Vulvodynia

Post  lunadaisy on Wed Oct 30, 2013 10:33 pm

Hi
I have been suffering with the symptoms of vulvo for a long time but did not know what it was. It started years ago and I tried to ignore it. I knew that after I had sex, I would still feel aroused or unfulfilled or just an exaggerated burning feeling in my vulva area... I almost thought I must be "oversexed" but in my head I wasn't. In fact, sex has never been a pleasurable physical thing for me. I would avoid having my partner touch my genital area when ever I could. If they tried to stimulate my clitoris I would cringe in pain it hurt so bad so I would just move their hand away. Instead I would just act like I wanted to please them...to avoid them physically touching me... it was just a natural reaction that I really couldn't explain at the time.
Afterward the sex was over, the throbbing and itching and burning began and made me want to try to climax thinking that since I was aroused during sex but didn't climax then my body wanted to complete the task.. so after my partner was gone or not around I would use a vibrator to try to climax... to get the throbbing and pain to stop...... that was probably the worst thing I could do because it would make the vulvodynia symptoms even worse... and I would try the vibrator again trying to climax thinking that is all I needed to relieve this horrible feeling..... Since I lived alone... sometimes I would try this remedy 4 0r 5 times a day until the symptoms would stop or I would stop thinking about it.... I would also sit in a hot tub of water which did seem to help a little and after a few days eventually my body would settle down... until I had a sexual encounter again... and that whole thing would start over.... So now... I have not had sex in a long time but my acute vulvo has turned into chronic without any sexual stimulus at all... I just hurt, itch burn, feel bloated, and have symptoms of a uti even though I do not have a urinary tract infection and I do not have a yeast infection.....just the symptoms ...and now it is a daily issue. When I am really busy I can some how ignore it but if I am working on the computer, watching tv, or crocheting or anything I do that is not strenuous ... I am uncomfortable, itching and burning and quite irritable. I also feel the pain inside of my vagina too. I have seen a gyn and had a pap smear that hurt like hell ... I felt sorry for the doctor because I was crying while she did that proceedure. I am wondering if that too is a sign of vulvodynia. Anybody else have painful pap smears. Ok... it is a little hard to be so personal but all the women on here have been kind enough to share their very personal stories so I feel I should shed my shyness in describing how I feel. Maybe others can also relate or have some insight as to my story. I am wondering if the vibrator didn't cause more damage to that very tender area too.

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Re: Sex problems confusion with Vulvodynia

Post  mary jane on Thu Oct 31, 2013 11:45 am

@lunadaisy

please see a specialist gyn for your problem as soon as possible and try some plevic floor therapy.
Why do you say pap smears hurt you ?
I have the same issue, mine is due to severe vaginismus
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Re: Sex problems confusion with Vulvodynia

Post  Alana3 on Thu Oct 31, 2013 1:09 pm

pap smears hurt a lot of people with v.

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Re: Sex problems confusion with Vulvodynia

Post  Kathy100 on Thu Oct 31, 2013 2:40 pm

Yes - I had to have my last one under anaesthetic.

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Re: Sex problems confusion with Vulvodynia

Post  lunadaisy on Thu Oct 31, 2013 3:37 pm

Thanks Kathy Good to know they will give you the pap smear with anesthetics because after my last one I swore I would never have another one!! Mary Jane, I don't know why it hurts so bad but it was torture! Maybe the Vulvo is associated with it....a couple of women have responded with the same painful pap smears that have V on this site.
I have an appointment with a urologist in a couple of weeks who works with gyn problems as well... I dread that because he wants to look into my uritha with a camera.... omg that is going to hurt like hell. Which leads me to something else that might have some meaning to someone... when I was 30 I had a lot of uti and kidney infections. My gyn said that she did not want to keep treating it and thought I should see a urologist to find out why I was having these uti/kidney infections so often. So I made the appointment. The urologist said my uritha was too narrow to drain all of the urine in my bladder when I peed and said he was going to "stretch it" ... I was already on the table with my legs spread, and then he took a metal rod and proceeded to stick it up my urita.... omg I almost hit the ceiling in pain and shock... he did not prepare me for such a torture .... I imaged witch hunts... if you scream you must be a witch as they tortured you back in the medival days... who the hell would stick a metal rod in a womans uritha without some kind of anisthtic... after that procedure, I had to go teach a class later in the day. I excused myself from my class to go to the restroom to pee... and omg I had to bite my lip and hold on to the wall as I peed as the pain was even worse than the rod! That lasted over 3 days every time I had to pee. so the urologist decided that I was not a candidate for "stretching torture" so he suggested I have an operation called a urithiatomy or something like that. I was admitted to the hostiptal and under anistesia they cut my urithia to make it wider. The hope was that my bladder would drain more properly and I would not keep getting infections. It took over six months to heal from that but finally I did and stopped having the UTI and kidney infections. However, before I learned about vulvadynia I made the appoint with the urologist becasue my symptoms also extend to my uritha which actually hurts.....I have had two urine test and they came back no bactiria or urinary track infestion, no blood, no sign of any problem with the urine test. So that is why he wants to "take a closer look at the urithia" .....so I told him about the rod issue and he said he would give me a script for one valuim to take before the proceedure(by the way one valium cost me 10 bucks at Walgreens as the drug companies really do rip us off in the United States) Anyway, I still might back out of going back to the urologist as I am so affraid of the pain. Has anyone ever had urinary problems with V? Anyone ever been tortured with a metal rod by a urologist? Any problems at all with the urithia in connection to Vulvadynia by women on this site? I would really like to know if this is also a condition or is a seperate issue. Thanks to everyone who responded to my last letter. Ps I have noticed if I take a motrin it helps sometimes... But the bloating of my belly is driving me crazy as well. I was fine this morning but as I sit here typing... I feel all my syptoms creaping up on me.... yuk

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Re: Sex problems confusion with Vulvodynia

Post  Alana3 on Thu Oct 31, 2013 4:50 pm

Urinary problems are common with vulovdynia, I had them but as soon as I had my vestibulectomy they all went away. Find a gynecologist who specializes in vulva problems rather than a regular urologist. And valium is 10 dollars no matter what the quantity is I get them single or 50 and they're always 10. But yeah, with my vulvodynia I had urinary issues as well, it sometimes goes hand in hand. If you have no bacteria have they tested you for IC?

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Re: Sex problems confusion with Vulvodynia

Post  Leslieg on Thu Oct 31, 2013 4:54 pm

Luna, I've heard of one case (it may have been o this forum) where a woman had yeast overgrowth in urethra that was the cause of all her V issues.  I believe she was treated with long course of antifungals and was OK.  Maybe ask them to swab/culture urethra at your next appointment?  Just a thought........

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Re: Sex problems confusion with Vulvodynia

Post  Sarah001 on Thu Oct 31, 2013 7:31 pm

Mine is caused by pelvic floor dysfunction and when I clench really badly I get urinary symptoms too so I would definitely consider a Women's Health PT. The previous treatments on your urethra may have set off pelvic floor spasm because of the pain and that in turn can cause V. As for smears, I'm years overdue for one because I can't face the extra pain right now, not sensible but if I had any odd symptoms I would go.
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