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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 …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


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.

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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

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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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