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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 …

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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 …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

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: 6

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: 3

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: 10

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 …

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Vulval pain cured only to have a bartholin cyst again

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Vulval pain cured only to have a bartholin cyst again

Post  mary jane on Wed Jun 04, 2014 7:54 pm

After 8 months of Amitriptyline 50 mg and 3 1/2 of Pregabalin added I cured all my pain, pain with touch, pain with intercourse, you name it.
However, now I have another bartholin cyst (my 6th in 9 years) and am begging doctors to give me a marsupialisation only to be sent home with pills. I will soon be back to square one with the pain...I really detest all OBGYNs right now....
I went to my GP who refused to see me and told me to go to A&E (ER). When I got to the ER, they told me to go back to my GP and ask for a gyn. referral? WTH???
I think that either 1. they are scared to operate on me because I have chronic pain OR
2. my medication cannot be taken when given a general anaesthetic

I hate doctors so much right now
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Re: Vulval pain cured only to have a bartholin cyst again

Post  Alana3 on Wed Jun 04, 2014 8:26 pm

Sorry to hear that I think it's fine to take those drugs under anesthesia.  I never discontinue birth control when I go under and I'm fine.  They never tell me to do that either.  Go to a specialist rather than generic gynos.  Plus the ER is def NOT trained to deal with womens issues like ours.  Go find someone who is known in what they do.  Of course I don't really know how things work over there so that may not be doable.  Ugh that sucks so bad I was feeling good that you weren't posting on here! I figured everything was going well.  Damn! Are you still with that guy??? Smile

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Sorry

Post  Caropes on Wed Jun 04, 2014 10:31 pm

So sorry and I feel your pain. I was just diagnosed today with vv. it happened along with a Bartholin cyst that I had excised. The doctor prescribed pregabalin 300mg three times a day. I was wondering what else you are taking that made you pain free until your cyst came back? I have been in pain now for three months and am praying the pregabalin gives me relief! I hope you get answers for your pain.

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Re: Vulval pain cured only to have a bartholin cyst again

Post  Leslieg on Thu Jun 05, 2014 1:21 am

Sorry Maryjane......like Alana, I was feeling good for you too. What pills did the doctors give you for the cyst? Try not to panic....maybe they'll work. You will be pain free again. Hang in there......xo

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Re: Vulval pain cured only to have a bartholin cyst again

Post  zarli on Thu Jun 05, 2014 10:07 am

Thinking of you Mary Jane try and stay positive if you got rid of the pain once you can do it again and it might not come back as bad. Be as assertive as you can with your Doctors I feel letting them know exactly how you are feeling will hopefully make them show empathy.
xx

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Re: Vulval pain cured only to have a bartholin cyst again

Post  mary jane on Thu Jun 05, 2014 11:41 am

You're all just great. Sending a big hug for you all I love you 
@ Alana, it makes sense what you say. It can't be the pills I'm on...and yes, I'm still with that guy, I attribute the last bit of my cure to him, he's been very sweet...
@leslieg: hug

Carotes: that's interesting, can I ask more about your cyst ? did they lance and drain it and then your pain started or how exactly ?
It was the amitriptyline which worked for my pain initially, but it took 3 months for it to work...another thing that helped was desensitisation, where you gradually get the area used to touch again..make the nerves learn there is no reason for them to create pain
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Sorry

Post  Caropes on Thu Jun 05, 2014 12:07 pm

MaryJane, I sent you a msg.

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Feeling better

Post  Caropes on Tue Jun 10, 2014 11:40 am

Mary Jane, how is your Bartholin cyst doing? How is you vulvar pain? Hoping your doing better Smile. -Cathy

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Re: Vulval pain cured only to have a bartholin cyst again

Post  Alana3 on Tue Jun 10, 2014 1:17 pm

Ahh well that's good news! At least about the guy, how's your hooha doing (I love I can be blunt here! haha) Was thinking of you the other day, love.  Hope you're feeling better.  Remember each day brings something different some good and bad.  I'm headed in for surgery on the 25th for endo so I feel how bummed you are!  I keep trying not to think about it, but they took me off bcps and now I'm an emotional wreck.

Anyway, shoot me a message and catch me up on your life!  Very Happy

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Re: Vulval pain cured only to have a bartholin cyst again

Post  mary jane on Sat Jun 14, 2014 9:59 am

Hi girls,

@ Alana: Endo sounds like a proper challenge, you are a real fighter in all of this!

I ended up doing a marsupialisation on my cyst a week ago, I recovered fast thanks to ami & lyrica.
However I seem to be getting the same cyst AGAIN so I don't know what now. Doctors say there is no way to prevent them
and a good hygiene is not enough. So now I have an extra hole for nothing. S***
They also said they want to remove the gland which might mean full blown pudendal neuralgia which is almost impossible to treat.
ah well

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Re: Vulval pain cured only to have a bartholin cyst again

Post  Alana3 on Mon Jun 16, 2014 1:19 pm

Maybe removing it will make you feel better?  I have no idea that is one thing I never got.  I know another girl on here got her's removed.  I think she was OK after.  Don't quote me on that though

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Re: Vulval pain cured only to have a bartholin cyst again

Post  mary jane on Mon Jun 16, 2014 5:06 pm

I will remove it if it's a must, but it's so deep inside and they cut into the vaginal wall as well, and a rare complication is nerve pain Smile) this is quite funny actually
Is there like a charity where we can donate money so they research this damn disease more??

Everyone is talking about cancer, but chronic pain is no fun

anyway, how have you been, Alana?? Give me a quick update
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Re: Vulval pain cured only to have a bartholin cyst again

Post  Alana3 on Mon Jun 16, 2014 5:44 pm

hahaha was supposed to have surgery this month but the hospital FUCKED UP and never scheduled me so now I get to wait until August.  Ask me how excited I am about that one.  I got off birth control everything was great for 10 days and just started bleeding again today (after 8 months of continuous bleeding on the friggin pill).  Besides that I feel great haha (no really I do!).  I'm just waiting for some relief somewhere.  However, my vuvlodynia is still OK and having tons of sex with the boyfriend so I cant really be THAT upset.  It's this damn endo that I want to punch someone in the face with.  Smile Oh and the boyfriends surprise bday is this week so that's stressful too! hahahaha But my attitude is a lot less manic than before so a plus!

Besides the hooha how are you doing??

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Re: Vulval pain cured only to have a bartholin cyst again

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