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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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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