Vulvodynia Support
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    » Hope to all my suffering ladies
    Mental strength EmptyFri Oct 23, 2020 12:04 am by ringostarr26

    » Please tell me this can get better
    Mental strength EmptySat Jul 18, 2020 7:38 pm by sammykramer

    » By no means cured, but doing much better!
    Mental strength EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

    » How I cured my Vulvodynia!
    Mental strength EmptySat Dec 07, 2019 11:54 am by Millie

    » 7 months since the diagnosis
    Mental strength EmptyWed Aug 14, 2019 2:38 am by agtoronto

    » Gabapentin Gel. or other topical creams
    Mental strength EmptySat Jun 15, 2019 5:22 pm by mary jane

    » IMPORTANT FOR UK SUFFERERS
    Mental strength EmptySat Jun 15, 2019 5:21 pm by mary jane

    » Help New Diagnosis
    Mental strength 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!
    Mental strength 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


    Mental strength

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    Post  naomi Sun Jun 13, 2010 3:42 pm

    There are days, weeks and months when I just haven't got the strength to cope with this condition. It just carries on like a nightmare. Every waking moment with constant pain and soreness. I end up feeling so jealous and resentful towards people I know (not that they'd know it). I really don't know where I do find the strength, apart from having the most caring parents in the world. But I hate knowing that this is hurting them so much too with worry and concern.

    Well if you haven't already guessed I'm having a 'feel sorry for myself' weekend. Usually 50% of the time I pick myself up and try and get on with things as best as I can. People could look at me and think I was a happy go lucky woman. They'd look at my facebook photos and think I wouldn't have a care in the world. If only they knew. I suppose you could say the same for others with whatever life throws at them.

    I try so hard to get on with things. Try to be positive... "Positive Mental Attitude" as people tell me .....(I'll PMA you if you dont shut up!!!) But every time a new consultant comes along (im on number 8 now after 2 years) and says they'll try and help and nothing comes of it, palm me off to someone else, it just cuts me up inside.

    I don't feel like a woman, I feel like a fraud. And I know many people would say not to blame myself and it isn't my fault but it doesn't make me feel any better.

    Then after all of this self loathing and me me me talk starts the guilty feelings.....some people have much more severe conditions, no family or support etc etc and then I end up feeling worse. I know I should be grateful for what I have.

    So thats me today... and I really haven't the foggiest how to snap out of it!!! (chocolates not the answer...ive put on so much weight since I'm been forced to be less active). A twister ice lolly might help a bit though. Very Happy

    Sorry if I have depressed anyone reading this. It just scares me so much that I cant have a normal go at life... no pain, chance to be able to have a normal relationship, sex life (been so long), the chance to be able to have children (not the turkey baster option). And to go through this alone just scares me even more xxx
    naomi
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    Post  jules Sun Jun 13, 2010 5:10 pm

    Naomi, thanks so much for sharing. I know we all can relate to your feelings. It is a horrible disorder to have. I want to let you know that I have felt completely hopeless as a result of this disorder. BUT, I do not feel that way anymore. I too went to 8 different doctors looking for relief. Some of these doctors I paid out of pocket for. I received my diagnosis at the world renowned Mayo Clinic in MN. in December of 09 and the doctor there did not know how to treat me. Have you tried Lyrica? I received relief first with Neurontin (an anti-convulsant). I am on 3000 mg. Neurontin cut my pain in half. Then recently my nurse added Lyrica. I am taking 100 mgs. of that. For the first time in almost a year, I had three weeks of almost no pain. Currently, I am going through a flare up. So for the past maybe 10 days I have had pain. But, I also have hope. I am asking my nurse practitioner to increase my Lyrica.

    Suggestions: buy a foam donut to sit on. I have two, one for work and one for home. I can't sit on a chair for more than a half an hour when the pain is bad. These donuts have helped immensely. I also recommend going to a Pain Clinic. The doctors at the pain clinic have helped me more than any others. they know how to treat pain. I had two spinal blocks. They did not help w/ pain so I won't do that again. I have been given a prescription for Vicodin. That helps take the edge off of the pain. Have you tried any of these things?

    I want to help you anyway I can. I was told by my doctor that this is a "tricky" disorder to treat. But, I am not giving up. You have a right to feel the way you do. This is a horrible disorder to live with...but, there is hope around the corner.


    Julie

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    Post  naomi Sun Jun 13, 2010 6:50 pm

    Man what a pants situation we are in! aargghhhhhh makes me so sad there is little they can do.

    thanks so much for your reply. I'm having a a bit of a melt-down this weekend and feeling like the world is against me rah rah rahhhhh Smile

    I currently am on no medication for my condition (consultants only refer to it as Desquimative Inflamotary Vaginitis as I suggested it could be after months of research on the net and cancelling out other causes....I think I could qualify as a gynae soon!). But that is not a confirmed diagnosis they just go with what i suggest usually or palm me off the some other unsuspecting gynae

    The only tablets I am on are citalopram 40mg daily (for my low mood). And Pregabalin (lycria) 300mg daily. But the Pregabalin/lycria was only given to me for generalised anxiety a.k.a being stressed up to the eye balls. I havent noticed any improvement, it has got worse down there over the last 6months. I dont know why as I have had to give up my job (too much movement and so mentally down) so I move around and do very little in the way of exercise. Sex is a complete no go, me and my partner were messing around recently and he slightly entered me....man I shot up and literally hit the roof and then got upset. He still sticks by me though but more often than not he goes off and does his own hobbies as I cant join in. rubbish rubbish rubbish.

    Im thinking of moving into the flats next door to the Mayo clinic in MN.....(jokE!) would be good though. Or california so I can live near Dr Crandall....amazing!

    I suffer with not the pain usually associated with V....I dont get stabbing pains etc, It is just red raw down there internally and on the entrance to my 'La-la' Smile to even try putting a finger up there is just horrendous soreness. The consultants are meant to be seeing my a date to be put to sleep so they can go more examiniations and biopsies. Soon they will take more swabs...the surface even bleeds when they take swabs, thank god im under and not awake next time.

    Sorry about my spelling/grammar its pretty bad I know! I get so lazy sometimes on computers.

    I tend to sit on really soft sofas (recently been staying at my parents house as I hate feeling lonely in my house share....so not me, im usually really independent Sad but I sit more lower so im resting on my lower back....probably not a smart idea for future back complaints. Or a sit leaning on one or the other butt cheek....such an arse!! ho ho ho...atleast I can manage a slight giggle at my awful joke! Smile

    Like you say I 'have a right to feel the way i do' but im fed up with feeling the way i do!!! I long to be care free and actually feel happiness....the last time that was about ten years ago...before the sex!!...thrush...bacterial cysitits.....evil!!! If I have better days when Im pretending to be happy It makes me sad as im the opposite inside. I know they say whay doesnt kill us makes us stronger but im not feeling v strong at all.

    I feel like Im writing a diary! I hope I haven't offended anyone.

    How do you keep strong???
    naomi
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    Post  Sarah001 Sun Jun 13, 2010 7:05 pm

    I'm so glad to see some posts on here! I joined a few days ago partly because I have no-one I can talk to about this but when my "hello" message received no responses I figured the forum must not be in use anymore, obviously it is!

    I feel exactly the same way naomi, I wake up each day and can barely force myself out of bed because I know the pain will be there and there's nothing I can do right now to get rid of it. Research doesn't help, it just depresses me further because no-one seems to have any answers and although I've lived with severe pain in my joints every minute of every day for the last 6 years it never got me down like this has. Sex is impossible for me, I burn all the time and I'm red raw inside too. I can see my 13 year relationship disintegrating before my eyes and I'm powerless to stop it.

    I have absolutely no idea what to do about this and spend all day with a feeling of utter hopelessness and despair in the pit of my stomach. The only way I can keep going is to think of things to try and formulate a kind of plan of action so I don't give up.
    Sarah001
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    Post  naomi Sun Jun 13, 2010 7:21 pm

    OMG your message reads like it came straight out of my head Sad

    I havent been on here for a while, like you say, it gets depressing cruising the net and just chasing my tail for answers Sad

    I guess as i felt so low today that is why I am here right now... otherwise I feel like my heads going to explode with frustration and panic!!! affraid

    I too am panicking about my relationship going down the plug hole before my very eyes (man I sound dramatic tonight! Smile
    theres nothing I can do about it. I know there are other ways of being close to my partner but the thought of it just makes me want to crawl back into bed. poor blokey. I know folk say that if he was unhappy he would end the relationship...but it doesnt make it any easier all the same.

    I vote we have a pajama party as we dont want to get out of bed!! Smile but not watch 'Sex and the City' as it just depresses me!!...eat ben and jerrys and watch Family Guy/Americas next top model (my guilty indulgence!!!) hehe!

    I suppose I ought to show myself or my folks will get worried....never too old to get a hug from Mum!

    xxx Very Happy Very Happy

    Oh, where are people from?? I Live in Cheltenham in England...near Bristol. Gorgeous part of the country xxx
    naomi
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    Post  Sarah001 Sun Jun 13, 2010 7:42 pm

    I'm from Lincolnshire in England, another gorgeous part of the country in my opinion! Very Happy

    I agree there are other ways to keep blokes happy but I keep thinking it's only going to take one attractive woman who is interested in my bloke and CAN have proper sex with him and he'll be off. He's always been a bit of a flirt as it is and women seem to love him. I should probably stop thinking about it, stress isn't the answer and I can't do anything to stop it if it is going to happen. Rolling Eyes

    Give your Mum a hug from me too, I miss my Mum even if I am almost 37!!
    Sarah001
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    Post  jules Wed Jun 16, 2010 2:03 am

    I'm from beautiful Minnesota. Number 1 of the U.S. States in health care. land of 10,000 Lakes (really more than that). Also known for very cold and very snowy weather in the winter. I would like to connect on facebook. I can't remember who was willing to do that and how. I don't want the world seeing my information on this forum.

    j

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