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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

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


Confused and wondering how I got here. Can you offer some perspective?

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Confused and wondering how I got here. Can you offer some perspective?

Post  overwhelmed on Fri Oct 13, 2017 2:01 am

Hello - I am a 22 y/o female who is newly diagnosed. A quick background on my story to give some context - my life changed as it knew it 7 months ago. I started having an itch, so I went to planned parenthood and was told it was a yeast infection. The regular yeast infection pill cleared it up and I was symptom free for one month. Then the itching returned, and was accompanied by burning. Nothing looked wrong on the outside except some redness. I went to the gynecologist and was tested for every STD, all negative. She sent out a culture and it was also negative for yeast & BV - but doctors had been prescribing me yeast cream because they still thought it was yeast. Got a biopsy - nothing came back but some slight inflammation. This whole time I'm still getting wet preps done, then I get a diagnosis of DIV. Use the cream ad it doesn't work. Now I develop shooting pain that comes in random attacks. Get all new blood tests again six months after this started, still negative for STDs. Finally my doctor suggests it's neurological and puts me on amitriptyline - my symptoms have dramatically improved.

I finally get into the Dartmouth Hitchcock Vulvar clinic - have any of you had positive experiences with treatment there? - and the doctor officially diagnoses me with vulvodynia. I will increase to 50 mg of amitriptyline and begin physical therapy in December.

So, I have a few questions about all of this new information.

  • Does anyone else experience itching as a primary symptom? I guess it's more of a burst of some type of feeling, like pinching, not always itching, and has all but gone away since I've been on amitriptyline for almost two months.


  • How did I get this? Was it brought on by the yeast infection? I had never had a yeast infection before in my life. My mom and aunt both went through similar episodes in their life, but was told by their doctors that it was yeast. However, their problems persisted just like mine, and I was told mine was yeast for months too.


  • The doctor at DH said this could have been brought on by all of the incorrect medicines I was given. Has this happened to anyone else?


  • For the first year of my life that I had sex, it was extremely painful. Then, things seemed to be okay for a year or two. Since my troubles started, I have an aching type of feeling after sex sometimes, like a bad menstrual cramp.


  • I have always had horribly difficult periods my entire life. Heavy bleeding for up to ten days, extremely painful cramps. Now that my troubles have started, I get random cramp like pains when I'm not on or even supposed to be getting my period soon. Some of the shooting pain feels like it's around my ovaries, but I got an ultrasound at DH and there is no sign of ovarian cysts or endometriosis. Does anyone experience period pain like this? Can it be related to vulvodynia?


  • Lastly, I struggle with body image issues. So relieved that the amitriptyline has improved things, but I have gained ten pounds in two months - I go to the gym and run daily. Is there a substitute for amitriptyline that can counteract weight gain? Or anything I can do while on elavil to STOP wait gain? Not about to stop amitriptyline because of weight gain, but I just don't want to gain anymore than this.


I guess I have a lot of questions but not a lot of people to go to. Hoping to identify with someone here, and do more reading on other people's stories. It's been an extremely long road to get here. Looking for any feedback or guidance you would be kind enough to offer.


overwhelmed

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Re: Confused and wondering how I got here. Can you offer some perspective?

Post  fairlight10 on Fri Oct 13, 2017 9:07 pm

Glad amitriptyline is working for you.I am on a similar drug. The shooting pains you are experiencing are nerves firing . I don't have these.now or burning sensation. I can have still have low level tingling or stinging. I believe this can be caused by my urine being acidic. Too much coffee can cause this. I was also told it was just yeast. Kept being prescribed creams and pessary. They just made it burn even more. Antibiotics for uti. I thought I was going mad. Visited gynaecologist who diagnosed vulvar vestibulitis. He put me on Nortriptyline 20 mgs. Had acupuncture which was helpful. That was over 5 years ago. Have tried to reduce dose to 10 mgs but start to feel uncomfortable. So, keep taking the tablets in low doses. I have read they only work at a low dose. I have not experienced any itching but at the beginning the pain felt like it was up and inside me.

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Re: Confused and wondering how I got here. Can you offer some perspective?

Post  Angelmegs on Sat Oct 14, 2017 5:29 pm

I have a similar story. Terrible period my whole life but I’m still waiting to see if I have endometriosis. I was overprescribed yeast infection meds and the problem escalated. Have you been on birth control? I think that my problems got much worse once coming off of it after being on it for 5 years. Btw I’m 20 years old. And my pain used to be mostly itching but not it’s like a throbbing hot feeling with an itch

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Re: Confused and wondering how I got here. Can you offer some perspective?

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