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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 …

Comments: 3

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 …

Comments: 1

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 …

Comments: 0


New here- my story

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New here- my story

Post  MelisaD on Wed Apr 20, 2016 6:25 pm

Hi all,

I'm 28, from Australia. I've been diagnosed with crappy condition for 5 years but I suspect I've been suffering for much longer. I'm too sure what triggered it in the beginning. When I was initially diagnosed it was a continuous pain, anything and everything would aggravate it, but after taking endep it reliever it to a point where only provoked pain through sex or examination.
I've been with my husband the same amount of time, it's been such a struggle, since he was my first everything.
I decided to come off endep as I felt like it had plateaued and started gabapentin but that hasn't helped at all.
Ive seen my specialist and all they want me to do is do my physio.
Just feeling quite down at the moment. Has anyone become pain free completely from physio?
My husband wants me to get the operation, but I'm a bit scared it'll be botched and won't even help.

MelisaD

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Re: New here- my story

Post  emalita on Wed Apr 20, 2016 6:51 pm

Hi! I'm sorry to hear you've been suffering with this condition for so long. I'm not currently receiving physical therapy, but my specialist did tell me I would have to do home dialator therapy once my symptoms have calmed down a bit. So unfortunately I can't comment on PT myself, but I've heard it works wonders for some women. You can try searching this site to read through what women have said about it Smile

Surgery is an extremely serious decision that, obviously, shouldn't be taken lightly. If you do choose that route, I hope you do it for YOU, not anyone else. I hope you find relief!

emalita

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Re: New here- my story

Post  MelisaD on Wed Apr 20, 2016 6:54 pm

Thanks for the reply. I'll have a look through and see if anyone has had success with just dilators

MelisaD

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Re: New here- my story

Post  PainBlogger on Wed Apr 20, 2016 7:59 pm

I'm improving a lot with physio (including dilators) and taking duloxetine. It's not a quick fix, but well worth trying physio.

PainBlogger

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Re: New here- my story

Post  gingercat2426 on Thu Apr 21, 2016 12:39 am

Hi,

Can I ask where in Australia you are located? I'm in Melbourne and after visiting several unhelpful GPs/Family Planning I've decided to bite the bullet and try and get a referral to the Royal Women's. I know of a few physios that specialise in pelvic pain but I think they tend to focus more on vaginismus than vulvodynia - either way feel free to message me if you want to talk about anything.

gingercat2426

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Re: New here- my story

Post  MelisaD on Thu Apr 21, 2016 9:20 am

Hi I'm from Melbourne. I do get seen at the Royal women's. The physios and sexual counsellor are lovely there, though the vulvar derm doctors (consultant in particular) are idiots in my opinion.
Yes I agree they concentrate too much on vaginismus. Thank you so much for the offer.
I'm feeling a bit better seeing all the lovely comments

MelisaD

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Re: New here- my story

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