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» What's next?
Fri Apr 20, 2018 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 opinions on birth control pill

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Need opinions on birth control pill

Post  Delilah1 on Wed May 07, 2014 6:00 pm

Hello ladies. My daughter is 20 years old and in a loving and serious relationship. She is telling me she wants to go on the birth control pill. She is a virgin and has never used any kind of contraception. Having V myself, it worries me that she could develop it. I have read the theories that perhaps the pill contributes to the onset of V for some women. I have never used oral contraceptives myself. Does anyone have any opinions or advice? Would an IUD be better?

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Re: Need opinions on birth control pill

Post  Alana3 on Wed May 07, 2014 6:29 pm

An IUD isn't really recommended for women who haven't had babies yet. Plus they are excruciating to put in. They are however good if you have endo, adeno, etc., but can still be prone to infection! And if you haven't had a kid, they can be expelled by your uterus. Hence the reason I would never in a million years get one. Most 20 year olds don't have them.

It's not really proven that birth control can be a contributing factor to vulvodynia, I know plenty of women who aren't on it and have v. Take her to a specialist who has an interest in vulvodynia and see what they recommend. If you don't even know if she has vulvodynia, you could be stressing out over absolutely nothing.

I would just go to a doctor and see what they say. A doctor would know way better than anyone on here. I've been on bcps since I was 14 but have had pain since I was 3. I love the pill for the most part. But I also don't have vulvodynia anymore.

Also, just to add these are THEORIES. There is absolutely NO evidence whatsoever that states this is true. I just read an article that said that even discontinued, women still had pain. I wouldn't put on your daughter what happened to you, you are two different people. Go to a medical professional and get their advice.

Alana3

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Re: Need opinions on birth control pill

Post  Delilah1 on Wed May 07, 2014 9:21 pm

Thanks for your advice, Alana. I love my daughter so much and I never want her to have to deal with this horrible condition. It takes so much from you. It steals your self esteem, womanhood, confidence....not to mention just dealing with the pain everyday! It affects every part of your life. we all know- we've all been there and dealt with all of the same issues. I talked to my vulvodynia specialist. She said there is no direct evidence that oral contraceptives cause V. She said some of the experts believe there is a connection and some don't. Guess I just needed to hear what my fellow V sisters felt. Thanks

Delilah1

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Re: Need opinions on birth control pill

Post  alessandria on Thu May 08, 2014 6:07 am

Alana, some reading for you on IUDs real quick, because I think it's important for you to know: http://bedsider.org/features/243 . There are a LOT of myths out there about IUDs that I wish people got to hear more about, because they're actually great options. They're hugely prescribed around the world to women of all ages, and often a favorite method of birth control in terms of low systemic dose of hormones, great prevention of pregnancy, and lower risk for people who can't take the OCP (clotting disorders, migraines with aura, sexual effects, etc). They're actually awesome for a lot of things, and more and more used by young people. Many of my friends have Mirena, and a couple now have Skyla as well (we're all in our 20s, no one has kids yet, not one of us has had a nightmare experience with it!). There are some drawbacks to the Paragard in terms of causing more bleeding than baseline for some women, but I think Mirena is very well-tolerated by most. I had a Mirena prior to all of my V issues, and actually thought insertion/removal weren't anywhere close to the level of pain I had on a daily basis when my V was at its worst.

The OCP discontinuation is NOT a curative factor, but rather a "do no further harm" kind of thing, even if you ask the experts who believe the OCP instigates vulvodynia. Sadly, removing the cause doesn't mean you can reverse what has happened -- there's a whole chain of events that happen downstream of the cause. It's kind of like how you should stop smoking if you have lung cancer -- you'd still have the lung cancer, but you'd take away something causing it to progress more quickly or become refractory to treatment. There's good evidence that vaginal dermis changes with the OCP even in normal women, the question is whether that's a contributory factor or unrelated. Multiple subsets of V likely do not even have hormones as a cause, but regardless, why not remove a possible contributory factor if there is a safe and effective equivalent that definitely doesn't play a role? Women do not get better in this case from just going off the pill, but they stop provoking the feedback loop that keeps the tissues in a relative hormone deficient state (increasing SHBG). Topical hormone replacement is indicated for hormone-dependent V, not going off the OCP alone. The verdict is still out, but the verdict is still out on EVERYTHING in vulvodynia other than vestibulectomy. That's not to say that the hypothesized factors don't play a role, or that certain treatments do or don't work, just that we don't know what works and for who, and there aren't a lot of great tests to figure out who will benefit most from what.

So going back to the original question! It's up to your expert whether they want to try a hormonal therapy for your daughter. There are a lot of reasons people go on the OCP, but if she is solely on it for birth control purposes, there is no reason an IUD shouldn't work. I hope things improve!

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Re: Need opinions on birth control pill

Post  Alana3 on Thu May 08, 2014 1:14 pm

Yeah, I'm good, doctor has way too much control over my body. With a pill, I can stop taking it at any time, with that, if they don't feel like pulling it, they wont. No thanks. Most people I talk to say you have continuous bleeding for 6 months to a year. I guess if you don't have endo it would work but nope, no way in hell. Frequent infections are not my bag. Plus there is just the concept of something unnatural being in your body for 5 years. That just sounds wrong to me. I've read enough to know that if you frequently get diagnosed with yeast and/or BV its not for you. And I get those infections all the time.

I'd say the pill or whatever you decide is a personal choice, if she doesn't have v than why not go for it? Just because you have it does not mean she will. Especially since there is absolutely no evidence saying that there is a link. If not 18k for a new vagina that was worth it haha... I hate being a medical rat.

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Re: Need opinions on birth control pill

Post  alessandria on Thu May 08, 2014 4:02 pm

Alana, sorry, I didn't mean for you!! I think you have a uniquely complicated case because of the endo (and obviously it's up to you and your team what you feel is a good match for you!) I just wanted to make sure you knew the facts about IUDs regarding their safety, pain, etc, even if you have decided based on your other condition that they're not right for you. I don't want people to walk away thinking that the IUD is not an option for vulvodynia by itself, because that limits options in a way I don't think is necessary. I cannot even take the OCP safely because of other conditions I have without risking getting a stroke, and considering 10% of women are in the same boat (have a history of migraines with aura), I want people to know there is still a safe and effective birth control method out there for us and that a lot of what people think about IUDs is wrong. I think you and your doctors will know what's best for you, and no one should tell you otherwise. There are a lot of factors in medical history and on exam that can make IUD vs. OCP the better choice, but those are all readily apparent within a doctor's visit. For a lot of us with V though, there aren't any of those factors and the choice is left up to us about what kind of contraception we go for, so having the facts straight going into that discussion is good!

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Re: Need opinions on birth control pill

Post  Alana3 on Thu May 08, 2014 6:38 pm

That's why I always say go to a medical doctor. No one knows what's good for anyone really, especially if they haven't been yet and don't even have the disease. For most people, most of this stuff works just fine, for us, well that's another problem haha. IUD's aren't wrong, but I was just saying, (like the pill) they aren't for everyone and was just saying stuff I have heard about why a young girl whos never had sex may not be the best candidate. Yes, they are deemed safe and effective, but sometime's that's not the way to go. Nuva ring and the patch are also other options. For me, the ring isn't an option because I'd be freaked it would do something to my vulvodynia, but my friend loves hers. So it's always something and a person's best bet is to go to a doctor, ask as many questions as possible, weigh the options and go from there!  Very Happy 

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Re: Need opinions on birth control pill

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