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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


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

Some Progress with Duloxetine

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Some Progress with Duloxetine

Post  PainBlogger on Mon Nov 02, 2015 11:23 am

Hi everyone,

I've noticed some progress since I've switched from tricyclics to duloxetine and I thought people might be interested to know. I was going to post last week, but was in two minds because I didn't want to tempt fate and have a relapse! Well, as of yesterday, I have had a bit of an increase in pain again Neutral , but I've decided that I still should be optimistic and, whatever happens next, I've had quite a few better days over the last few weeks.

I've been on the duloxetine for about 6 weeks, started on 30mg and now on 60mg for the last 4 weeks or so. In the last three weeks my maximum average daily pain has been a 4/10. Now, I should point out that I think I'm quite conservative in rating my pain. I never rate it above a 6. Why? - Because when the doctors say 10 is 'the worst pain you can imagine', I can imagine a great deal! In my way of thinking, if it was a 9 or 10 I'd be on the verge of unconsciousness. So, 6 is my worst, but 6 is pretty darn bad. Anything above a 1/10 means it's disrupting my mood, though it's between 3 and 6 that really gets me down.

I've had quite a few days where my pain has been as low as a 1/10 in the last three weeks. Last week it was about 1/10 most days - which I'm really glad about. What's more, that's including some days when the external problem area has been slightly provoked by touch (though I've still been very careful about what I'm eating/drinking/wearing/washing with/sitting on). I don't know if my internal pain is any better because I have not investigated.

I don't know what (if anything) has made my pain increase today, but it's back to spiking whenever I empty my bladder Neutral . Hopefully it will calm down again soon. It's about a 3/10 right now.

So, basically, I just wanted to share that I feel more optimistic now than I have in a while. I feel like if I can have a few more weeks like last week then maybe I can make a dent in breaking the pain cycle more permanently. Even if have two steps forward and one back then that is still gradual progress. I think the duloxetine is playing a substantial part in the progress, although it is possible it's just random and I'm still having acupuncture and doing physiotherapy exercises also. But I continue to keep a pain diary, so I can reassess in another month or so.


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Re: Some Progress with Duloxetine

Post  WaahwaahUK on Mon Nov 02, 2015 8:46 pm

This is fantastic to hear! Hope it continues for you.


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