Vulvodynia Support
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    » Hope to all my suffering ladies
    MTV - i cant have sex. I am so disappointed in this episode EmptyFri Oct 23, 2020 12:04 am by ringostarr26

    » Please tell me this can get better
    MTV - i cant have sex. I am so disappointed in this episode EmptySat Jul 18, 2020 7:38 pm by sammykramer

    » By no means cured, but doing much better!
    MTV - i cant have sex. I am so disappointed in this episode EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

    » How I cured my Vulvodynia!
    MTV - i cant have sex. I am so disappointed in this episode EmptySat Dec 07, 2019 11:54 am by Millie

    » 7 months since the diagnosis
    MTV - i cant have sex. I am so disappointed in this episode EmptyWed Aug 14, 2019 2:38 am by agtoronto

    » Gabapentin Gel. or other topical creams
    MTV - i cant have sex. I am so disappointed in this episode EmptySat Jun 15, 2019 5:22 pm by mary jane

    » IMPORTANT FOR UK SUFFERERS
    MTV - i cant have sex. I am so disappointed in this episode EmptySat Jun 15, 2019 5:21 pm by mary jane

    » Help New Diagnosis
    MTV - i cant have sex. I am so disappointed in this episode 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!
    MTV - i cant have sex. I am so disappointed in this episode EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

    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


    MTV - i cant have sex. I am so disappointed in this episode

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    Ellie
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    Post  emma Mon Jan 10, 2011 2:11 pm

    I don't know if anyone has seen this but mtv has made an episode labelled - i can have sex.

    To be honest i dont think it portrays vulvodynia conditions very well.

    These girls all ended up with a quick fix solution!! i have not had any relief from any of my treatments and it just doesn't show the extent of the emotions that you go through. The girls did a great job but i think mtv edited it the wrong way.

    I have had many different treatments over the time span of about 4 years and seriously, when you realise that each treatment that you have put your heart and soul into hoping it will work, well it hasn't worked, its the worst feeling in the world.

    Also in every day situations. I dont feel that i can discuss this condition with anyone except my family. My heart sinks when any of my friends bring up sex in conversation and ask for my opinion. I just make up answers because otherwise it gets awkward.

    id love to know what you guys think of the topics ive raised here

    em xo


    emma

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    Post  Mouse Mon Jan 10, 2011 7:12 pm

    Hi Emma,

    Welcome Smile

    I don't think anyone outside the US can view the show. I read about it and tried to find it on youtube, no luck.

    I read a review about it on the Susan Bilhiemer's secret suffering website, she said while it was great there was a show about vulvodynia the treatment options and how to get treatment weren't very well covered.

    I've told my friends I have a chronic pain condition, not even my husband gets that it's 24/7 though. I didn't tell my family until last month (and then just the PG version) my Dad has cancer so they have enough to worry about. It's tricky! I was gobsmacked recently when a woman I know told me about her friend who has just had a breast removed. Apparently she goes on about it a bit. No shit!!! Maybe people are just too busy to care? Which is why we have online forums for likeminded people.

    This year I'm going to try really hard not to be such a hermit. I can come on here and have a moan with people who understand. I'm seeing a PT for the first time and maybe a womens health specialist. Hmmm will also need to find a job!

    Have you joined the FB group Emma? We are all real people and it's lovely to see peoples faces.

    Take care xx.

    Mouse

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    Post  Ellie Tue Jan 11, 2011 1:14 am

    I completely agree with you Em! It was portrayed as something that has a quick fix solution Sad It was nice to get the word out about issues like this, but it really didn't show the real frustration and that it effects more than just not being able to have sex.It effects your day to day living. But still nice to get the word out.
    Ellie
    Ellie

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    Post  [Sara] Tue Jan 11, 2011 4:15 am

    I do agree that they edited the show pretty badly...they focused so much on sex (well, I guess that was in the title of the show Shocked ). Not surprising since this culture is so focused on sex, and having lots of it. It doesn't help me with my condition at all...

    It was good that they got the word out about these conditions, but I do think they made it seem like it can just magically be cured. I was just amazed that MTV would do a special about it, so I posted it on the facebook group when I found out about it. They definitely left out a lot of crucial information.

    I tried using a video-capture program to record it for the non-US ladies, but I still haven't figured out a way for them to watch it! Maybe I'll think of something else soon. cyclops

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    Post  emma Tue Jan 11, 2011 7:53 am

    i added one of the girls from the video to facebook. Her name is Tali keteri and she has posted the videos on her facebook

    emma

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    Post  Ellie Tue Jan 11, 2011 8:01 am

    I was going to say, I am getting the full episode very soon here (downloading) for others out of the states to see it. Smile I will post it here and/or somewhere on these forms so everyone can view them.
    Ellie
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    Post  noni Tue Jan 11, 2011 2:54 pm

    Have not seen it, but as it is mtv....not a complete shocker that it focuses on sex
    noni
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    Post  Sebby (Admin) Tue Jan 11, 2011 7:42 pm


    OOOh I may search for her on facebook. I subscribed to her videos on youtube.

    I remember channel 4 doing their embarrasing illnesses programe on vulvodynia and the women went in there got prescribed some ami was given actupucture and would you belive it she was getting better! No mention on other meds, pelvic floor dysfunction, bio feedback, etc etc...

    I dont understand at all how it all seems so simple from telly!

    I emailed the programme...ignored..how suprising.. Mad

    Im thinking we need to get this into the press more..I really dont know if any womens magazines have covered this topic properly? Not sensationalised mags like chat..sick of seeing the horrible cover stories they have like "my cat killed my husband then our house blew up and I got my legs cut off by the lawnmower" type stories Shocked

    Like Cosmo or something? Hmmm I dont mind being interviewed if I knew they would portray it in the right way and I was anonymous lol but I dont really trust they would cover it properly with all its complexities and how it really effects our lives?

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    Post  nadja Tue Jan 11, 2011 8:16 pm

    emmmielou wrote:i added one of the girls from the video to facebook. Her name is Tali keteri and she has posted the videos on her facebook

    nadja

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