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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 …

Comments: 5

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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So over this!

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So over this!

Post  sailor_moon on Sat Nov 01, 2014 1:05 am

This week has taken its toll on me. Currently sitting at home by myself doing nothing all weekend. I'm just having a big old cry.


I'm sick of the itch and burning...especially at work or in public where I have no means of relief. 
I'm sick of getting extreme period pain but no period. Wtf is that? I havn't had a period since early July. I've had 4 real periods this year. Sick of the pain I get, being armed with a swarm of pads in case I do bleed, but nothing happens.  It's very frustrating,  because when I do finally bleed it's gonna be:star: like someone has gone on a killing spree.. I won't be able to cough or sneeze without filling an entire pad. And what looks like chopped liver coming out of me. Not to mention the pain that goes with it.
My boobs are so sore it even hurts to wear a bra. What the hell is causing that? I'm not pregnant and I am eestrogen deficient to the max, so why are they sore?


Online shopping...looking at all the wonderful summer shorts that I can't wear that I would usually live in over summer. Looking at all the gorgeous dresses and heels I would usually wear out to dinner but I no longer go out because of the fear I'll need to puke, or 1 late night leads to 5 days of extreme fatigue afterwards.

I would usually be planning a beautiful holiday for my husband and I to go on. But I haven't had a holiday in 2 1/2 years...the past year and a half has cost me over $10,000 in medical bills, paying for incompetent doctors with no answers. Combine that with minimum wage and a mortgage to pay for it doesn't leave me with much. And every spare cent I get I have to save because my bosses might fire me because I'm sick. And living and feeling the way I am, a holiday is pointless because I can't enjoy myself because I'm itchy, burning and fatigued outta my brain.

I just stay at home on weekends and don't socialise coz I feel like shit. I look like shit because my hair is dry, brittle and thinning.  I have acne. I'm all bloated up from not getting my periods for so long.

A lot of people probably think I'm being petty and selfish but I don't care. I think every single woman on this forum has every right to feel sorry for themselves. Noone should have to go through this. It destroys your quality of life and your self-esteem. 

I hope everyone else is coping a bit better than me. Its just one of those days I guess.
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Re: So over this!

Post  Alana3 on Mon Nov 03, 2014 7:48 pm

are you on the pill? you sound like I was about a few months ago. I also got a drug that significantly reduced my period to nothing (like liners the entire time). I love that drug! But seriously, you sound like me and if you are on the pill GET OFF OF IT! Let me know if I can do anything I know where you're coming from... and it's weird to hear summer its getting cold over here haha well "cold" for Florida Smile

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Re: So over this!

Post  sailor_moon on Mon Nov 03, 2014 8:04 pm

Thankyou Alana. I appreciate the response, I didn't expect one seeing as I'm being such a sook.

Nah Im not on the pill, I've been off it for almost a year now. I will never take it again for as long as I live!

I know you had Endo, can I ask what your symptoms were?
My doctor suspects  I have it and I am on a 3 month waiting list for a laparoscopy and Hysteroscopy,  which I am totally freaking out about. Are you  really sore afterwards? How much time should I take off work? My doctor will be doing it,  and he said he will be having a really good look at everything and fixing any form of problem that is there. Apparently they go in through your bellybutton. ..and I have a major bellybutton phobia!  In the sense that if I see a baby that has recently had its cord cut and its bellybutton is all gross, I'm out the door dry reaching! I don't want my bellybutton to look like that after...its freaking me out!
Now that really is just me being a sook!lol

Was your vulvodynia contributed by your Endo at all? 

Sorry for the 1 million questions, you are literally the only person I know who has been through it all.
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Re: So over this!

Post  Alana3 on Tue Nov 04, 2014 7:23 pm

I never had the lap because my symptoms disappeared after I got off the pill praise jesus. Why do they make you wait thats insane? My symptoms were: severe awful cramps, nausea, headaches, really bad bowel issues (hurt like hell when I pooped during my period), nonstop bleeding, swollen boobs, bloating, extreme exhaustion (still have that), but they cleared up as soon as I got off the pill.

I did have a hysteroscopy, that was a bitch and embarassing. My boyfriend came in, I stood up and bled all over the floor so make sure you have tons of pads- no tampons or anything for at least 2 weeks. No sex. Make sure to stay on your pain killers!

No, I don't know why my vulvodynia decided to rear it's ugly head, I always had women problems, frequent UTI's when I was little, first yeast infection when I was 17. Vaginal anything (sex, tampons, etc) used to freak me out so bad I'd have extreme anxiety because it hurt. I remember one day when I was 3 I was bleeding there, and no one really figured out why. When I was 9 I horseback rode and my vagina hurt so bad after and I remember talking to my mom about it. I still ride now though and no problems.

Honestly, I think take 2 weeks off work after your surgery, get Gas-X you will have gas pain take them a few days before and after (seems silly, but it helps), make sure to walk as soon as you can, don't over do it. Make sure someone is with you for the first 2 days. Get a heating pad and all your stuff set up in advanced. Were talking pads, magazines, food, heating pad, Gas X, pain killers, movies, anything you might need...

Your belly button is not going to be gross it's gonna be covered anyway right after, but you can barely see the scars from everyone I saw (boyfriends sister and various friends). Let me know if you have any other questions.

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Re: So over this!

Post  sailor_moon on Wed Nov 05, 2014 2:22 am

Jeez, I have every single symptom you had except for the non-stop bleeding! I don't get my periods at all..  I havn't had one since July.

As you have probably seen in my previous posts, I have a rare form of PCOS and extremely low estrogen leves... take those 2 factors out of the mix and I'd probably be bleeding like a bitch too. On the odd occasion I do get my period,  it is super super heavy....to the point where I step out of the shower onto the bathroom mat and blood will pour out of me onto the floor.

I'm glad you told me what to expect...needless to say I will be super sore and sorry after having the laparoscopy as well on top of it. I have to travel an hour and a half to the hospital for surgery. I think I might have to book a motel for the night maybe.

As long as I get answers. Seriously,  if the itching and burning wasn't involved I could probably deal with it....I just want the discomfort gone more than anything.

I just hope that it is all related....not completely different problems. I know you had provoked vulvodynia,  but mine is non provoked and I don't know how they can fix that via surgury. 


Can I ask how old you are and how old you were when your full on vulvodynia and endo started? Did they both start together?
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Re: So over this!

Post  Alana3 on Wed Nov 05, 2014 9:08 pm

I am 28. I don't really know my periods were always horrific from when I started at 14 and obviously wasn't having sex at that age (ok maybe not so obvious, but I wasnt haha). When I did have sex for the first time at 18 it hurt really bad, but I thought it was just because of my first time, then I started having it regularly and it wasn't a big deal. BUT then out of the blue it started hurting again at about 20 or so and didn't stop until I got the surgery and I was 27...

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Re: So over this!

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