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New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 3

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 …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

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Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5


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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