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» What's next?
Today at 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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: 4

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: 3

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

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


need to know its gonna get better

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need to know its gonna get better

Post  nova_chek on Sat Sep 29, 2012 2:25 am

Hi my name is Nova and I have been suffering with vulvodynia for 2 1/2 years now, this is the third time I've dealt with this issue. Almost a year ago I was properly diagnosis and was able to find the correct treatments for this condition. Things were going well when I started going to Physical Therapy and using a dilator set, my pelvic muscles where crazy tight, so much it was curving my tailbone inward! I am also sensitive to candida, so along with changing my diet and other things everything seemed to help. Then I went back home and cheated on that diet and I really suffered for that one. That was getting better and then had some lower back muscle issue which brought up the pain a bit. Guess I had high hopes that this would go away like the other two times. I know stress is a huge factor for me. I have found doing yoga and deep breathing exercises really help with pain level. Usually I am pretty optimistic about this issue, but I'm sure everyone here knows we all have our breaking point and I'm at mine right now. It seems like every time I hit bottom, my husband and I have a huge fight. It seems like no matter how supportive he is and tries to understand the issue there is no way to take away the frustration he has.....who can blame him. So was searching online for some type of support, women I can talk to about this who know what I'm saying. I have great friends and family, but they will never understand the physical and emotional toll this chronic pain issue does to a women. I feel hopeless right now and all I want is to have a normal happy marriage and hopefully one day have kids.

nova_chek

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Re: need to know its gonna get better

Post  LillyK on Wed Oct 03, 2012 5:09 am

Don't give up Nova! You are going to get through this, and you can still have kids! I am so sorry you are having a terrible time right now. No oneshould have to go through it. I hope your husband will be more understanding soon. Stress is a huge issue for me too and I have had so much of it this year that my problem came back after 5 yrs pain free. I have to go now but if you need to talk please feel free to reply!

LillyK

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Re: need to know its gonna get better

Post  Alana3 on Thu Oct 04, 2012 4:54 pm

It will get better, I went to a new doctor and am now pain free (first time in forever) but I only have localized v, so it may be different if yours is everywhere. I was given a topical and it makes everything feel so much better! Surgery is my next option, but I am trying this first. I'm not so sure about changing the diet deal. Yeah, it's a good idea but the nerves are still there, so if you don't treat the v I feel like you're just masking it. I also do Yoga and acupuncture and it seems to work really well. But this medication is amazing. He also gave me lidocaine patches that you put on the part that hurts, and the pain is gone within minutes (apparently it numbs it enough to have sex, I haven't gotten that far yet, as I don't have a boyfriend and have only been on this stuff for a few days). But a few days is all I needed to start feeling better. I don't know where you are, but my doctor in Florida is absolutely amazing. It's a lidocaine/gaba/amysomething compound that you put right on the irriation. At first, it burned, but now I don't think anything of it, and for the first time in 4 years I am unaware that I own a vagina. (Who knew?!). Maybe look around for a specalist I went to about 10 doctors before I found this one, he was able to point right to it and say here's your problem and this is what it is. He also showed me too! I thought it was all around but it's only in one spot. The point is don't give up!!! There are really good statistics for the compound I'm using and the surgery itself. I'm just worried that it will make it worse or come back. Questions I need to ask next time, but so far so good! Good luck to you and hope your pain goes away soon, this is such a pain and I feel for everyone on here, I was close to sucidial before anyone came up with an option for me Smile

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Re: need to know its gonna get better

Post  nova_chek on Fri Oct 05, 2012 2:34 pm

LillyK- thank you for your kind words and support. After my husband and I spoke I came out of my depression, he reassured me that he isn't going anywhere and he loves me. He also made the comment so we don't have sex, such a relief to me! I guess I put so much pressure on myself to get better so we can have sex and I need to let that go. He also wants to let him carry some of the burden so I don't get so down. I know if I think positive then things will get better, pain level anyways is better when I'm not upset. Next step getting pain free!!! Thank you!!!!

Alana3- my doctor told me about the lidocaine stuff, I'm hesitant to try it cause I know it won't get rid of the problem. I tried an anti-depressants for a few months, it blocked the pain, but it knocked my butt out 24/7. I never had any energy for anything. I will keep the lidocaine a possibility though. I have had luck with my physical therapist, doing yoga, seeing a neuro-muscular massage person (wonderful) and now am starting to see a chiropractor. I have realized the root of my pain is tight pelvic muscles and just learned from the chiro that my hips are not aligned. I also want to try meditation, cause I have noticed if I do some deep breathing exercises then it takes the pain away, I'm able to relax all the muscles and clear the mind. I know everyone's root of the pain my be different, but for me its crazy how simple the solution is, but yet so hard to attain. Who knew I would have to learn to relax my pelvic muscles! Oh and you talked about diet. Well after my thyroid surgery I developed allergies, never was allergic to a thing in my life until that time. One of the allergies is candida. Candida is like adding fuel to a fire and I have had to learn this. Basically I can't eat anything with a lot of sugar, so no sweets or even fruit. Also I don't eat yeast anymore, nothing with mold, nothing fermented or with buttermilk in it. I have had to cut out a lot of stuff, even healthy stuff, like no more fruit or yogurt! I take nystatin if I want to have a little bit of cheat days, but I learned this summer even taking nystatin cheating a lot irritates the skin and back to being in pain! I know some women have luck with a low oxalate diet, I tried it and it didn't affect me. Maybe this is something to try. For how bad this pain is I wish there was a clear cut answer as to why and how to treat it! Thanks for the info.

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Re: need to know its gonna get better

Post  Aussie on Mon Oct 08, 2012 11:06 pm

Alana3 wrote:It will get better, I went to a new doctor and am now pain free (first time in forever) but I only have localized v, so it may be different if yours is everywhere. I was given a topical and it makes everything feel so much better! Surgery is my next option, but I am trying this first. I'm not so sure about changing the diet deal. Yeah, it's a good idea but the nerves are still there, so if you don't treat the v I feel like you're just masking it. I also do Yoga and acupuncture and it seems to work really well. But this medication is amazing. He also gave me lidocaine patches that you put on the part that hurts, and the pain is gone within minutes (apparently it numbs it enough to have sex, I haven't gotten that far yet, as I don't have a boyfriend and have only been on this stuff for a few days). But a few days is all I needed to start feeling better. I don't know where you are, but my doctor in Florida is absolutely amazing. It's a lidocaine/gaba/amysomething compound that you put right on the irriation. At first, it burned, but now I don't think anything of it, and for the first time in 4 years I am unaware that I own a vagina. (Who knew?!). Maybe look around for a specalist I went to about 10 doctors before I found this one, he was able to point right to it and say here's your problem and this is what it is. He also showed me too! I thought it was all around but it's only in one spot. The point is don't give up!!! There are really good statistics for the compound I'm using and the surgery itself. I'm just worried that it will make it worse or come back. Questions I need to ask next time, but so far so good! Good luck to you and hope your pain goes away soon, this is such a pain and I feel for everyone on here, I was close to sucidial before anyone came up with an option for me Smile


Alana glad to hear your localised pain has improved. Do you have pain 24/7 or just when the area is touched? Would you be kind enough to post here the name of the prescription cream you use and what percentages of each medication so others can take it to their doctors to try?. Also what base the cream is, is it a versa base? It is often the bases of the creams that irritate as they are full of perservatives. Your doctor should tell you this if you don't know Very Happy

Thanks.

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Re: need to know its gonna get better

Post  bluekangeroo on Thu Oct 11, 2012 8:40 am

Hi Nova, have you read 'teach us to sit still' by Tim Parks? Or 'A Headache in the Pelvis"

I've not read the headache one, but am reading the Tim Parks book now, it's all about his search for a cure for his pelvic pain (yes men can get it too and with even worse problems added in like urinary issues) some of his symptoms like finding it unbearable to sit down are so similar to mine - I found it fascinating. Anyway the book is an autobiographical novel, even quite funny in places, he is a great writer, and its about all the doctors he saw and the hopeless time he had, until he found the book a headache in the pelvis and learned that through relaxing his muscles he could make the pain go away, himself with no drugs.

I'm not sure what happens next as I've not finished it yet, but am hoping he is going to discover meditation and that is going to fix him, nice and simple! ha!

But it struck me that your experiences have been so similar with being able to control the pain through yoga and meditation, I thought you might find it interesting and encouraging, if you have not read it already?

The first part is hard going all about the pains and the hopelessness of finding no cure, but part two is when he hits upon this book and I think it is going to get more positive and helpful!

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Re: need to know its gonna get better

Post  nova_chek on Fri Oct 12, 2012 12:31 pm

Thank you so much, I have never heard of those books. They sound like they would be encouraging, let me know how they are, not sure when I will be able to get those, but will def look into them!

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Re: need to know its gonna get better

Post  Aussie on Mon Oct 15, 2012 6:52 am

Also heal pelvic pain by amy stein is worth a read!!!

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Re: need to know its gonna get better

Post  nova_chek on Mon Oct 15, 2012 1:06 pm

Thank Aussie!

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Re: need to know its gonna get better

Post  bluekangeroo on Mon Oct 15, 2012 1:22 pm

Hi Aussie, did you find that book helpful?

I thought it made a lot of sense but after doing the stretching routine religiously for a month I had worse and more constant pain. Had to give it up.

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Re: need to know its gonna get better

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