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    » 7 months since the diagnosis
    Its not all in your head!!! EmptyWed Aug 14, 2019 2:38 am by agtoronto

    » Gabapentin Gel. or other topical creams
    Its not all in your head!!! EmptySat Jun 15, 2019 5:22 pm by mary jane

    » IMPORTANT FOR UK SUFFERERS
    Its not all in your head!!! EmptySat Jun 15, 2019 5:21 pm by mary jane

    » Help New Diagnosis
    Its not all in your head!!! EmptySat Jun 15, 2019 5:07 pm by mary jane

    » 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
    Its not all in your head!!! EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

    » Vestibulectomy next week in London!! - questions!!
    Its not all in your head!!! EmptyWed Apr 24, 2019 8:32 pm by HedvigB

    » Dating with Vulvodynia and Vaginismus advice
    Its not all in your head!!! EmptyFri Apr 19, 2019 10:25 pm by Tartufo

    » Research Participants Needed!
    Its not all in your head!!! EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

    » Does anyone else have Endometriosis?
    Its not all in your head!!! EmptyMon Apr 08, 2019 7:54 am by Jo44

    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: 2

    Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

    Sat Aug 01, 2015 4:17 pm by Fielder

    Hi everyone,

    I'm a newbie.  I live in the UK.  

    I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

    I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

    Comments: 11

    An absolute success story- please read!

    Fri Mar 08, 2019 10:57 pm by Persevere1990

    Dear All,

    I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

    I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

    Comments: 0

    I'm sorry im rambling

    Thu Feb 21, 2019 5:49 am by Jet227

    hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

    Comments: 1

    New member need advice please

    Thu Feb 28, 2019 11:33 pm by PANDORA123

    Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

    Thanks

    Comments: 5

    MonaLisa Touch

    Fri Feb 08, 2019 7:35 pm by rl2091

    Hi All,

    I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

    Comments: 3

    Diagnosed Recently

    Tue Jan 08, 2019 3:55 pm by flissyg

    Hi All,

    I’m so glad I’ve found a place where there are others who understand how I feel!

    So this is my story:-

    I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

    Comments: 4

    New and need advice and help

    Wed Dec 05, 2018 3:26 pm by Cin124

    Hi everyone,

    About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

    Comments: 6

    New here would very much appreciate advice at the end of my rope

    Wed Jan 09, 2019 9:09 pm by Jma990o

    This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
    So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

    Comments: 3


    Its not all in your head!!!

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    Its not all in your head!!! Empty 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

    _________________
    Sebby
    XxX

    admin@vulvodyniasupportforum.com
    Sebby (Admin)
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    Its not all in your head!!! Empty 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
    noni
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    Its not all in your head!!! Empty 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!



    Sebby (Admin)
    Sebby (Admin)
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    Its not all in your head!!! Empty 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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    Its not all in your head!!! Empty 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.

    Lquinn01

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    Its not all in your head!!! Empty 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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