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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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.

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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

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

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: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


HELP need advice!

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HELP need advice!

Post  ivyrose on Sat Jul 16, 2011 2:02 am

Hello,

i am 18 years old. i lost my virginity when i was 16 and for about the first 6 months sex was completely pain free. While sex was still pain free i split up with this person and about 3 months later met somebody else. That's when i started getting a burning stinging sensation every time the vulval area was touched. I have had this pain ever since. It seems very localised, and this has been incredibly detrimental to my sex life... i'm almost scared to have sex now because i'm worried about how much it will hurt. At times it has been so so so painful and it is obvious at these times that I am not enjoying myself. At first I was worried that I had picked up an sti but after a multitude of tests I got the all clear... i went to the sexual health clinic many times just to be told that this was all in my head, the pain i'm experiencing is just because 'i am young' and i just need to 'get out there and enjoy my sex life... and not worry so much'.
I first heard about vulvodynia about a month ago when i searched my symptoms online, and i rang a helpline where i was told to go to my local doctor and arrange an appointment with a dermotologist. I'm due for my first appointment at the end of the month.

As you can imagine, being faced with something like this at this age is very daunting... all my friends are enjoying active sex lives and i am constantly being told how amazing sex is. the worst thing is, i remember when sex WAS amazing. i am also single and it feels as if i wont ever meet anyone decent as boys this age are only interested in one thing which i clearly cant help them with. I would be embarrassed to tell a boy about this condition because i feel as if it might put them off altogether, and so lately i have tended to shy away from dates etc because i feel as if there is really no point in leading anyone on.
For about half a year (around the time i lost my virginity) i suffered from some hormonal issues such as bleeding in between periods and acne, and was put on the contraceptive pill for this. i took the pill for about a year, and this affected me in many ways... i gained weight and became a great deal more crabby... i feel as if perhaps the pill might have something to do with my vulvodynia?

Anyway, i would really like to have a normal sex life sometime soon, and i have heard that antidepressants are one of the most effective ways of helping to treat this condition. So I would just like to know if anyone has experienced any side effects from taking this medication, and of course if it really does work. I have read a lot about how awful vulvodynia is and it feels like there is no light at the end of the tunnel so does anybody have any reassuring stories about their condition? Has anyone managed to cure this horrible thing or at least greatly improve their symptoms?

Any help would be much appreciated and it is so reassuring to find out that i'm not alone in this! thanks xxx


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Re: HELP need advice!

Post  Sarah001 on Sat Jul 16, 2011 12:08 pm

Hi and welcome. It sounds like you may have vulvar vestibulitis syndrome which tends to respond pretty well to either lidocaine applied regularly or physiotherapy. Try not to let all the negative stories online affect you, remember lots of the old posts are from women who recovered or improved and didn't bother to update, some women say they've tried everything but when you talk to them they haven't tried alot of the recommended things. The fact you are in pain during intercourse means you are likely going to be tensing the pelvic floor up in anticipation of pain so I'd definitely recommend seeing someone about your pelvic floor. The dermatology appointment is to rule out skin conditions and some vulvar dermatologists also prescribe meds for pain if there is no condition there to treat. I take 50mg of Amitriptyline a day but it only helped a bit with the burning so I had to add 300mg of Lyrica a day too. These control my pain to a degree but not enough to wear jeans or have sex but I have constant diffuse pain. The Ami made me gain weight and I'm currently trying to stop eating all the pies and lose the 10 pounds I put on! I felt woozy for the first month then it went off and I have a constantly dry mouth which is a nuisance but not major. Try to find a womens health physio to get your resting tone checked out.
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Re:Help need advice

Post  ria on Sun Jul 17, 2011 1:47 pm



I read your post and Sarah has given you good advice. Make sure you get the right doctor, if they tell you its in your head you need to find someone else. I have seen at least 20 different doctors before I got any answers and even now they do not really know whats going on. GUmed helped me they were very caring and understood my pain and anxiety. One dermatologist told me to buy some wine and relax........ I was frantic as it was like sitting on hot coals the burning was very severe.

I take Gabapentin my consultant at the vulva clinic said it never really goes away for some women but we try to manage the pain so we can live our lives the best we can.

Keep focused I do yoga meditation and believe the V wll go away as quick as it came.

Take Care
Ria Very Happy

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Re: HELP need advice!

Post  Sebby (Admin) on Sun Jul 17, 2011 9:46 pm


Welcome to the forum

A book I recommend is 'Let me Count the Ways, Discovering Great Sex Without Intercourse' - this doesnt mean you wont ever be able to have intercourse with little or no pain but 'outercourse' which is considered foreplay to everyone else is a great way to get your sexuality back.

Also not all men are only interested in one thing. I know what you are saying about younger men but even so, if one falls head over heels in love with you, sex will not be the only thing he is interested in.

Im in a new relationship (we are both in our 30s) and he is so very supportive.

Deff look into Physical Therapy and try an antidepressant or anticonvulsant to see if it can cut down the pain. There is a lot of experimenting with this condition but never give up. Research into all treatments available, there is always a chance that one or a combination of them will work.

Dont shy away from dates, that is what I was doing and if I had had continued to do so I would not be with the wonderful man Im with now.

Dates are to get to know someone and you can have several before you decide you want a relationship so you dont have to rush into anything if you dont want to. Do not let anyone rush you into anything sexual. I know its scary to think we might me rejected because of our condition but if we never take risks we will never know. And dont fear that you are leading anyone on. Agreeing to go on a date or a few dates with someone does not mean you are going to do anything sexual with them anyway! so you are not leading them on in anyway. As for the fear of leading them on...this is one I had, I also know that my boyfriend is happy to be with me even with this condition so my fear was unwarrented. If someone legs it cos of Vulvodynia then it wasnt meant to be and they are not the person for you

Keep positive that you and we can gain pain relief even though it may take a while of different treatments it doesnt mean our life or lovelife has to stop




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Re: HELP need advice!

Post  Zazu on Mon Jul 18, 2011 1:52 pm

Hi hon,
It sounds like you might have vulvar vestibulitis syndrome VVS, which is also called provoked vestibulodynia. I also have this. I'm going to give you the advice now that I wish someone had given me when I started. I would definitely suggest that you get one or both of these two books which can explain more about the causes, symptoms and treatment of this disease: 'The Vulvodynia Survival Guide' by Dr. Glazer or "When Sex Hurts" by Dr. Goldstein. After you do your research, you'll find that you know more about this than many doctors you see, so keep trying to get referrals until you find someone who prescribes a helpful form of treatment (which you can read about in either of those books). If you want to see for yourself whether you have VVS, do the 'qtip test' on yourself. Take a handmirror, a diagram of your lady parts and a qtip. If you touch yourself with the qtip around the opening (look in either of those books on where/how) and it burns or hurts, then you can diagnose yourself.
The second book is newer (when sex hurts) and talks specifically about how the birth control pill can cause this problem in young women. Basically, the tissue around the opening to your vagina, called "the vestibule" needs the right hormone mix and the pill can mess that up. My first advice would be to GET OFF THE PILL ASAP and plan on using condoms in the future.
Second of all, while you're waiting for your referral, buy lidocaine ointment (5% if you can, but 2% is good too). You can put it on the vestibule (tissue around the opening) before sexual activity to numb things. You can put it on twice a day to calm the nerve endings and help yourself get past this. You can even soak a cotton ball in it and put it just at the opening of your vagina over night. One study found that women who did this every night for seven weeks significantly improved their pain. For some women this works really well but for others it is too uncomfortable. Don't worry if it burns or stings at first - it will go numb after and you build up a tolerance to it.
Finally, look around for a women's health physiotherapist who deals with chronic pelvic pain and vulvodynia. Try websites, asking the ladies on here, or cold calling. Your doc will tell you to do this anyway so might as well get started early! You can read all about why this works online or in those books. Best of luck to you! Be well!

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Re: HELP need advice!

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