Vulvodynia Support
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    » Hope to all my suffering ladies
    Sex off the table? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

    » Please tell me this can get better
    Sex off the table? EmptySat Jul 18, 2020 7:38 pm by sammykramer

    » By no means cured, but doing much better!
    Sex off the table? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

    » How I cured my Vulvodynia!
    Sex off the table? EmptySat Dec 07, 2019 11:54 am by Millie

    » 7 months since the diagnosis
    Sex off the table? EmptyWed Aug 14, 2019 2:38 am by agtoronto

    » Gabapentin Gel. or other topical creams
    Sex off the table? EmptySat Jun 15, 2019 5:22 pm by mary jane

    » IMPORTANT FOR UK SUFFERERS
    Sex off the table? EmptySat Jun 15, 2019 5:21 pm by mary jane

    » Help New Diagnosis
    Sex off the table? 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!
    Sex off the table? 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


    Sex off the table?

    +2
    JstMrried
    KatieMay
    6 posters

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    Sex off the table? Empty Sex off the table?

    Post  JstMrried Sun Jan 25, 2015 8:16 am

    Ive finally nailed it on the head with how it makes me feel. I know i've tried to explain before, but this is it. So I'm going to type it exactly how I wrote it, it may seem like I'm talking to someone else, that's just how I write.

    The real deal is, is that it's been since May; 7 months and our sex life is shit. I am broken, vulvodynia. I feel hopeless and the doctors I no longer truly trust. I'd go to the specialist and they'd say, "here lets try this medicine, and come back in a month for a check up." And that'd go on and on for months/years with no solution, just constant follow up appointments, no real solution. I've been reading support group stories, all talking about how they've seen doctors for 3+ years. Specialists, chiropractors, yoga workouts, different diets, different vitamins, etc. I just want to talk to someone who doesn't say that we should take sex off the table. You know what that does to newlyweds, let alone a couple?

    Resentment: from him, thinking I don't find him sexy anymore, like I don't want him. He feels completely unwanted. He feels guilty for wanting me that way. He tries to keep it under control, cold showers and masturbation. Then he asks me for his weekly blow job that I promised I'd do every week since summer.
    Resentment: from me. I get nothing...constantly a job. Something about the wetness and worry/nervousness of "going down on me" turns me away from even that. So back to the blow job, picture this...I get in bed after a hot shower. I rubbed my nipples in the shower with soapy suds and closed my eyes. I'm imagining his strong hands electrifying in that satisfying way. But when I crawl into bed I'm sexually frustrated from being turned on, but knowing I'm broken. So I curl up onto my side and pull into the tightest ball that I hope will consume my feelings in the core of my stomach and I hold it there hoping they just swallow up and go away. I've started associating my craving for him with pain; pain down there like a knife and pain in the pit of my stomach from a burning hope that maybe it won't hurt anymore...but it always does. Once I'm in bed he wraps an arm around my stomach and pulls me into the small spoon. Immediately I feel his boner on my backside, and he tightens his grip to arch my back slightly and angle my butt to cradle his hard penis. I know what he wants and I don't blame him because it's been at least 7 whole days. He resists as long as he can. And in my head I know I can't sleep yet, I know that I have to slide over between his legs and give him what I promised since I can't do much else. My craving for him dissipates as I swallow his whole penis to the best of my ability. And I feel like I'm performing a duty as a wife, that I owe him. I am debted to him because he didn't know he was marrying a defect. And I feel bad, sorry for him, and broken myself. I didn't know. And it's the brokeness that make me choke on my own silent tears as I finish him. It's not supposed to be like this; this is the best way I know how to explain. To put someone in my own body and situation, to feel what I feel; that's the only way I know how to explain the brokeness that comes with "taking sex off the table."
    My husband is the most understanding and wonderful, not wanting to cause me pain, and yet I still feel this...how do people beat this?

    JstMrried

    Posts : 11
    Join date : 2015-01-25

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    Sex off the table? Empty Re: Sex off the table?

    Post  KatieMay Tue Mar 17, 2015 4:28 pm

    Hey Girl, I have just balled my eyes out reading your post because its how I have felt for so long. I have been in that exact same position so many times. That feeling of being 'broken', thats exactly what it is. I dont know if its like this for you but vulvodynia (which wasnt diagnosed for a LONG LONG time) has made me feel like less of a woman, less of a lover and less of a supportive partner but actually none of this is true and IT IS NOT YOUR FAULT, I hope you can remember that and that your partner clearly loves you and cares a lot about you.

    I came on here today as I'm feeling incredibly low. I was diagnosed whilst in a relationship last year which has since ended and hadnt slept with anyone for 5 months until this weekend, it wasnt agony during, and stupidly I thought, hey, its getting better, it was only slightly painful then next day but now its excrutiating and I've been crying all day and unable to go out. I'm trying to give you support by saying I'm sure things will improve but right now I'm in the same place wondering wether I'll truely ever be able to enjoy sex again. I'm a very sensual person, I love intimacy and sex and right now this condition literally feels like a death sentence.

    I understand the resentment on both sides and the turmoil this causes in relationships, it affected both my last two long term relationships and no matter how supportive and patient my partners were being I just felt a terrible guilt for not ebing able to give myself fully to them but at the same time resentment toward them for even wanting it as I knew they could never ever truely understand how things felt for me. I have been seeing a therapist for the last 5 months and cannot tell you the difference it has made to my confidence levels and my ability to understand the psychological impact vulval pain has actually had on me.

    Like I said I wish I could give you some advice or support other than to just say I've been through and am going through the same things myself but if you wanna talk some more about this, I'll be checking back in for sure, and am more than happy to chat if its in anyway helpful. I think it would be helpful for me!

    Keep your chin up hun, I know its ups and downs, I hope today has been more up : ) x

    KatieMay

    Posts : 9
    Join date : 2014-10-20

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    Sex off the table? Empty Thank You!

    Post  JstMrried Fri Mar 27, 2015 9:05 pm

    I really appreciate you replying to me, made me cry. I might be struggling emotionally right now more then anything. Feeling alone even though my husband is so supportive.
    I think he doesn't want me to feel like this is an all-consuming thing in my day-to-day activities, because he wants me to be happy and try to not focus on it. But I've got to tell you...it does affect me in my day-to-day. My confidence seems gone in my ability to feel sexy, because I feel like it's pointless and I don't want to be a "tease." And it takes the part of me that felt like a real woman.

    I could go on and on about it, but I know that YOU know what I mean. And I just wanted to say thank you for replying.

    JstMrried

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    Join date : 2015-01-25

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    Post  BpCookie Wed Apr 01, 2015 3:11 pm

    Hi hun, I too feel broken. Not being able to do my wifely duties (or so I call it). We have been married for over 15 yrs and all of this started over 3 yrs ago. I have Vulva Lichen Simplex Chronicus and have constant burning. Sometimes my entire labia minora and majora will burn and it will spread down to my buttocks to my inner thighs. Right now our sex life consists of handies (hand jobs) and boobies (press boobs together, oil em up and he can go to town on them). Every now and then we will have REAL sex but I will pay for it for 3 days. Lots and lots of burning. uuuggghhh. I really feel for my hubby.

    Have you ever tried an ointment called Lidocaine %5 ointment? You rub it in and it numbs the skin. If I'm going to have sex I rub that in 15 mins before hand. Also, I use one of those plunger things that you get in those over the counter YI meds and I fill it full of lube and insert it into my vagina to make sure it is VERY slick. Sometimes it hurts to have sex and sometimes it doesn't but no matter what, I'm always in a great deal of pain for three days after.

    I'm always afraid that he will get tired of not handies and will find another woman. I even go as far as checking his computer to make sure he isn't chatting to women and having cyber sex. Worry worry worry. Or maybe he will meet someone at work..............

    I'm 50 yrs old, peri menopausal, my looks are going down hill, so much pain and so many pain meds can really be hard on a person. It shows in my face. Bipolar then chronic back pain and then a broken vagina.......so what other nasty little thing will Mother Nature give me.

    Only thing I can do is make jokes about my broken vagina. When I see my gyno, I'm always joking about it. I guess its better then complaining about the pain.

    I hope things get better for you, for all of us. If you haven't tried the ointment that I listed above, then it can't hurt to try it eh.

    hugs

    The Burning Bush
    BpCookie
    BpCookie

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    Location : Arizona

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    Post  mrs.optimistic Fri May 15, 2015 3:53 am

    It brought tears to my eyes to read that because I felt like you were me. Vulvodynia going on four years. I'm only 20. I'm so scared this will never go away.

    mrs.optimistic

    Posts : 33
    Join date : 2015-05-14

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    Post  jjr23 Wed Aug 24, 2016 4:30 pm

    That message along with all of those replies brought tears to my eyes. I know that "broken" feeling all too well. I have my good days and I have my bad days. The bad days are really bad. I don't think anyone understands how this physical condition effects us emotionally. I'm new to this forum and I really love how supportive everyone is to each other. You guys have made things a lot easier. Just knowing that there's heaps of you out there experiencing and feeling similar stuff to me makes me feel less alone. Feel free to message me about anything

    jjr23

    Posts : 13
    Join date : 2016-08-23
    Location : Australia

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    Sex off the table? Empty I feel the same!

    Post  StellaLuna Thu Aug 25, 2016 10:15 am

    I wanted to tell you that I feel the same way. I have vulvodynia for 2,5 years. My boyfriend have made a lot of patience but he is very sexual and he keeps brings the matter all the time. So I feel always inefficient. I manage to have sex 1-2 a month but I know that is not enough for him and every time I reject his proposal of having sex he feels dissapointed. All this is a lot of stress for me and stress is the worst thing for vulvodynia.
    StellaLuna
    StellaLuna

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