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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


I am a sufferer of vulvodynia doing a sociological study on the experiences of women with chronic pelvic pain

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I am a sufferer of vulvodynia doing a sociological study on the experiences of women with chronic pelvic pain

Post  acameron on Fri Dec 22, 2017 4:03 am

Let me start with this disclaimer: I suffer from chronic pelvic pain as well, specifically vulvodynia. I am not regarding anyone interested in participating as a "test subject." We are peers sharing experiences.

My name is Annalise and I am a senior at the University of Oregon doing research for an honors thesis. I am conducting a study on the emotional experiences of women with chronic pelvic pain.

For this study to be successful, I am looking for women who suffer from chronic pelvic pain who would be interested in talking to me about their experiences. I can conduct interviews with you over the phone, skype, or in person if possible. Any identifying information will be kept confidential. If you wish to only provide me with your screen name that is okay too, I will only contact you on this platform and with your consent. This is on a voluntary basis so there will be no compensation, but I hope that this research will benefit women like us by alleviating some of the isolating effects of the pain.

I am looking for cisgender females 18 years or older who suffer from chronic pelvic pain originating from a genetically female reproductive system or the bladder/urinary system. In order to participate in this study you must have seen at least one doctor for your pain, and have experienced your pain for more than 50% of one year either consistently or episodically. You do not have to be diagnosed by a doctor with anything specific to participate, but it is okay if you are. Chronic pelvic pain includes, but is not limited to: vulvodynia, ovarian cysts, interstitial cystitis, vulvar vestibulitis, uterine fibroids, lichen sclerosis, pelvic inflammatory disorder, etc.

I am looking to complete an in-depth analysis on the emotional experiences of women who deal with chronic pelvic pain. I will be asking questions that span topics like interactions with medical professionals, experiences with sex and intimacy, coping strategies, and the physical and emotional effects of chronic pain.

If you are interested in participating in this study please let me know and we will go from there, thank you.

acameron

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Re: I am a sufferer of vulvodynia doing a sociological study on the experiences of women with chronic pelvic pain

Post  sarisbaris on Tue Jan 02, 2018 11:00 pm

I'd be happy to help but I consider myself cured now. And yes, I know that is rare. I battled V and UTIs for 15 years. So I've seen at least 20 western docs over the years and countless alternative including TCM and acupuncturists. I'm married and I have a toddler. So I have plenty of experience that I can talk about. Here's my blog. I really need to add more about personal testimony but I haven't found the time yet Wink
http://myvulvodyniacure.blogspot.com/


sarisbaris

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