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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


Its not all in your head!!!

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Its not all in your head!!!

Post  Sebby (Admin) on Sat Dec 19, 2009 7:39 pm

After my horrible experience with the Gynae a few weeks ago I have decided that I will place some useful quotes on here from Dr Glazer's book that confirm Vulvodynia is not "in our head" and that our conditon should be treated as real and given the attention it deserves.
A friend told me recently that some doctors she had seen (for a different Gynae issue)find it particularly difficult when their patients do not "tick" their straight foward boxes for diagnosis and treatment. Thats what I have also found with most doctors I have seen regarding my Vulva pain. This does not mean that it is untreatable it just means a fair few options need to be looked at and tried and more doctors need to take an active interest in this condition.

Have a look a the following quotes from The Vulvodynia Survival Guide:

"Many doctors do not yet acknowlege the condition as a real problem with a physical component. Despite a wealth of documented scientific information demonstrating the absence of psychopathology in vulvar pain patients (Meana et al 1998a)." pg 5

"Psychological studies show that in spite of the emotional reactivity and depression and anxiety that may result from suffering vulva pain, Vulvodynia patients are not different from the normal population (Meana et al 1998a)" pg 26

"At some time or another, most vulva pain patients have been told that there is no adequate medical explanation for thier complaints. Unfortunatly the doctor and even the patient herself may believe her problem is psychological in origin. Next the physician may imply that the pain is somehow not real......for the record the pain does exist, it is real, it is not in your head"
pg 122

So remember this the next time your are told its all in your head, dont give up, there will be caring doctors out there you just need to plod on and keep fighting even when you feel tired and hopeless. Even after my bad experience a few weeks ago I know their are good doctors out there. I saw one last May as an NHS patient in a private hospital but unfortunatly before I could get re-refered the hospital decided it would no longer see NHS Patients, so I have found out he is working in my local NHS hospital and have insisted I am refered back to him. I will keep you informed of that outcome I just hope he continues to be as caring as I found him on my first visit!

... to end on a positive note: "Thankfully most women find one of many treatment options helpful and are able to enjoy daily life without pain. They even go back to enjoying fulfilling sex lives" pg 5 "The Vulvodyinia Survival Guide" Howard I Glazer, Ph.D & Gae Rodke, M.D., FACOG.

Take Care and have hope....
Sebby
xxxxxx

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Re: Its not all in your head!!!

Post  noni on Sat Apr 02, 2011 12:28 am

Hey Sebby,

While I too realize this isnt a figment of my imagination...I also know that this condition impacts ones psyche tremendously...so I will be seeking counseling shortly...
I need to talk to someone face-to-face about this...just to unload and get feedback.

Take care everyone,

noni
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Re: Its not all in your head!!!

Post  Sebby (Admin) on Sat Apr 02, 2011 4:10 pm


Yes it most certainly does effect us psychologically. I too have counselling. The statement I am simply making is that the cause of V is not psychological. In other words, if you cheer up and chill out it wont just go away.

In too many areas of womens medicine in history dr's have told us that our minds that are to blame for this condition and that conditioin. They used to think the womb went walk abouts and floated all over womens bodies making them hysterical!



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Re: Its not all in your head!!!

Post  kukubadi1987 on Mon Oct 15, 2012 8:36 pm

hello girls, i am new to the forum (and to my new experience of valvodynia....). i had read many times about this book of dr Glazer "the vulvodynia survival guide"...do you suggest it for me to buy it?did it help you at all?

many thanks
katerina

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not in my head

Post  Lquinn01 on Sun Jun 24, 2018 9:07 pm

i have been suffering with pain down there, inside and out for a few years. i went to gyn and she said it was probably a hormone issue and gave me estrogen cream. i used it for 6 months with no relief. relued on lubricants to be able to gave intercourse. this did not help the pain. Finally i told hubby no more until i find something that helps. I was thinking on herbal remedies and read a post with herbal oils someone was trying that helped. so i just ordeted coconut oil and lavender oil. hopefully this begins to help. I feel really bad that i cant accommodate my hubby. I am 52 and i miss it also. I will post back in a while to give my results.

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Re: Its not all in your head!!!

Post  Guest on Sat Jul 28, 2018 6:29 am


Ladies!!!
I am trying to get the word OUT!!! 20 years of “vulvadynia”, ic, vestibulitis. Whatever the docs want to calll it. It’s been beyond depressing and has made me feel downright crazy at times. Incredibly painful, living in silent pain, going to doctor after doctor just to hear that “my mind is causing my vestibular area to flare up”.
PLEASE INSIST ON GETTING TESTED FOR A MICROORGANISM BACTERIA CALLED UREAPLASMA!!!!!!!!!!!!!!!!!
It’s a VERY hard bacteria to find!! Does NOT show up in urine cultures!! There’s a very specific test to find it and you MUST insist on being tested!!!! PLEASE BELIEVE ME!!! After 20 years of this craziness I FINALLY was diagnosed with this bacterial uti and THIS is what has caused the vulvadynia!!!
Doctors don’t even know about this. My new primary care tested me after showing up with a Walgreens uti rest showing positive leukocytes. The urine culture came back negative as usual. She had a sad talk with me about vulvadynia.
I don’t know what came over her to send the urine off to a lab and get it checked for ureaplasma, but she did. I am SO grateful. I am FINALLY HEALING quickly!!
Ueraplasma only responds to certain antibiotics. I’m on doxycycline. 14 days and it may take several rounds. This is a serious bacteria and it can kill you.
Some doctors will dismiss this test and bacteria and say it’s part of our flora. NO-INSIST. If it shows up as an infection because it’s colonized, it IS the cause of vulvadynia.
GET TO THE BOTTOM OF THIS VULVADYNIA LADIES!!! DO NOT BACK DOWN!! FIND A DOC WHO WILL TEST YOU for UREAPLASMA!!! DO NOT WASTE 20 YEARS OF YOUR LIFE GOING THROUGH THIS HELL LIKE I DID.
I’ve been through biofeedback, neurontin, creams, specialist after specialist.
I’ve found small handful of other ladies on the internet who have posted the SAME about their ureaplasma diagnosis. They are doing cartwheels like I am!!!
I am really trying to get to word out!!! I promise you ladies!!!! There is a CURE!!!
DO NOT GIVE UP!!!!! I will reply to as many ladies as I can!!!

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Re: Its not all in your head!!!

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