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Speaker 1: Brought to you by the reinvented two thousand twelve camera.

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Speaker 1: It's ready. Are you welcome to stuff Mom never told you?

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Speaker 1: From House Stepworks dot Com. Hello, and welcome to the podcast.

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Speaker 1: I'm Kristen and I'm Caroline, and today we are talking

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Speaker 1: about a condition that affects a ton of women, as

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Speaker 1: many as sixteen million in the United States alone, that

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Speaker 1: is not talked about very often, which is precisely why

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Speaker 1: we wanted to talk about it today. Exactly. I had

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Speaker 1: no idea what it was. I've never heard of it

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Speaker 1: when you suggested it, and I have a feeling that

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Speaker 1: a lot of listeners too, will have never heard of volvidenia.

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Speaker 1: Volvo what exactly? Exactly? According to the International Society for

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Speaker 1: the Study of Volvo Vaginal Disease, volvidenia is defined as

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Speaker 1: volver discomfort in the ab sense of gross anatomic or

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Speaker 1: neurologic findings. In other words, it's when your volva hurts.

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Speaker 1: It's pain, it hurts, it's a pain in the volva,

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Speaker 1: and a lot of times it is characterized by painful intercourse.

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Speaker 1: But we should go ahead and say right out of

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Speaker 1: the gate, the volvadinia is not a sexual dysfunction in

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Speaker 1: terms of lack of desire. Right, It's not that women

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Speaker 1: with wolvedenia do not want to have sexual contact. It's

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Speaker 1: that because sexual contact hurts, they might not want to

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Speaker 1: engage in it. And it is also not a sexually

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Speaker 1: transmitted disease, correct, And if you are experiencing some of

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Speaker 1: these symptoms that go along with volvedenia, you you might

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Speaker 1: think that it's a sexually transmitted disease because it's characterized

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Speaker 1: by chronic pain, burning, irritation in the area around the

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Speaker 1: opening of your vagina, which is the vulva, and there

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Speaker 1: is no identifiable cause, and it can last month, years,

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Speaker 1: or forever, depending on what kind you're suffering from. And

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Speaker 1: it's not just painful intercourse. There might be pain associated

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Speaker 1: with inserting tampons, undergoing public exams, even wearing tight jenes,

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Speaker 1: or riding a bicycle or sitting at your desk for

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Speaker 1: a long time. Yeah, people with boldenia frequently can't sit

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Speaker 1: still for long periods than to get up walk around.

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Speaker 1: And there's been a lot of um talk on the

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Speaker 1: internet from people who have experienced this because they're not

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Speaker 1: actually getting much help from their doctors, and so they're

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Speaker 1: having to form these communities online to share advice. And

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Speaker 1: this might sound like a rare condition. You know, there

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Speaker 1: might be people out there thinking, so it hurts to

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Speaker 1: wear tight genes that can't affect many people. Well, friendly

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Speaker 1: listener out there who is incredulous at the moment, I

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Speaker 1: am about to change your mind. According to a National

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Speaker 1: Institutes of Health Finance study conducted at our Red University,

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Speaker 1: they projected the incident's rate of volvidenia at one in

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Speaker 1: six women. That's thirteen million, one in six. Well that's

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Speaker 1: American women, yes, American women. Um. And then there's Dr

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Speaker 1: Oz who he actually had a segment on one of

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Speaker 1: his shows about volvidenia in the no embarrassment zone and um,

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Speaker 1: according to his numbers, and he had a gynecologist on

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Speaker 1: talking about this, six million American women experience this and

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Speaker 1: sixteen percent will experience it at some point, and so

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Speaker 1: you know, the numbers differ. But it's just one of

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Speaker 1: those things that's probably it's underreported because maybe women are

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Speaker 1: embarrassed to go to their doctor about it. They don't

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Speaker 1: know what it is. They think, oh, it'll go away,

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Speaker 1: or it's just something I'm going to live with, you know,

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Speaker 1: or their doctors are dismissive and don't know what it

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Speaker 1: is um. And the question is, maybe, well, what does

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Speaker 1: what does volvidenia look like? Surely there's some kind of

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Speaker 1: physical sign. Uh no, there is not. Actually, volvidenia looks

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Speaker 1: like a normal and you know, even though every vagina

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Speaker 1: is different, but it looks like a healthy I should

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Speaker 1: say vulva. Right. It's not until doctors actually look below

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Speaker 1: the surface that they can tell that there is a

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Speaker 1: lot of inflammation, more so than in the normal and

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Speaker 1: well quote unquote normal volva um. And there are a

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Speaker 1: few different types of volvadinia. This is a breakdown coming

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Speaker 1: from the Mayo clinic. It might be generalized, which would

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Speaker 1: involve pain around the entire volver area, or volvadenia could

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Speaker 1: be localized to a specific area, such as around the

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Speaker 1: vaginal opening or the clutter us. Right, and there's volver

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Speaker 1: vest vestibulitis. Sorry, I totally stumbled over that, which is

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Speaker 1: pain only when pressure is applied to the area surrounding

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Speaker 1: the entrance to your vagina. And there was an interesting

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Speaker 1: column on the Frisky that I saw. Writer Sally McGraw

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Speaker 1: was diagnosed with this, but only after she went to

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Speaker 1: several doctors, and they all told her different things. You know,

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Speaker 1: they all treated her for yeast infections, they treated her

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Speaker 1: for you know, more of the general pain, until one

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Speaker 1: doctor finally said, oh, well, this is what you have, UM.

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Speaker 1: And some of her advice for for fellow sufferers. She

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Speaker 1: cut out sugar or most sugar from her diet because

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Speaker 1: she says that reduces glucoast in her system, which reduces

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Speaker 1: the likelihood of yeast infections. She switched to cotton underwear,

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Speaker 1: stop using pantyliners, because it's very important when you have

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Speaker 1: volvidenia or any of these types local or generalized, to

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Speaker 1: try to keep your vagina as cool and dry as possible,

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Speaker 1: so obviously, you know, not wearing tight pants, UM. And

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Speaker 1: she uses light a cane for bad days when it's

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Speaker 1: either really bad she's having a really bad flare up

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Speaker 1: or before sexual intercourse. And she also switched to mild

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Speaker 1: fragrance free soap because she figures and maybe with the

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Speaker 1: advice of her doctor, that fewer unnatural substances on her

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Speaker 1: body certainly couldn't hurt. And you mentioned that she went

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Speaker 1: to a number of doctors, and that is such a

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Speaker 1: common situation for women who are trying to get a

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Speaker 1: diagnosis for wolveadenia and probably you don't know what exactly

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Speaker 1: is going on um and it's not uncommon. According to

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Speaker 1: a study from Harvard, sixty of women consulted at least

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Speaker 1: three doctors seeking a diagnosis, and astoundingly, forty of those

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Speaker 1: who seek professional help remain undiagnosed even after three medical consultations.

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Speaker 1: And that's coming from the National Wolvedenia Association. And good

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Speaker 1: the good news is finally, in two thousand six, the

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Speaker 1: American College of Obstetricians and Gynecologists and the American Academy

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Speaker 1: of Family Physicians finally realized, hey, you know what, a

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Speaker 1: lot of our doctors are not informed about wolvidenia, and

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Speaker 1: so they sent information to a hundred and fifty thousand

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Speaker 1: of their members alerting them to the proper die gnosis

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Speaker 1: of wolvidenia in the best ways to treat it. But nevertheless,

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Speaker 1: coming from a New York Times article from two thousand

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Speaker 1: and ten, I believe it could take up to six

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Speaker 1: different doctors for the average woman. I can't imagine, I mean,

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Speaker 1: can you imagine being in such pain and discomfort and

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Speaker 1: going to people having them be like, I don't know,

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Speaker 1: maybe you should just try something like that. I mean,

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Speaker 1: you know, I get some good advice. That's hard. Well,

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Speaker 1: and you have to imagine too that if you are

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Speaker 1: suffering from wolvedenia, getting a pelvic exam of cannot be

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Speaker 1: a pleasant experience. Um And echoing all of all of

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Speaker 1: what Kristen just said. In nineteen seventy study in the

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Speaker 1: Journal of American Medical Women's Association, nearly women chose not

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Speaker 1: to seek treatment at all. Um. That's that that number

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Speaker 1: has probably changed since then, but that's still a huge

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Speaker 1: chunk of people who are like, well, I guess I'm

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Speaker 1: just going to deal with it. And this reminds me

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Speaker 1: of the episodes that we've done on fibromyalgia, which affects

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Speaker 1: for more and the men, and also polycystic ovarian syndrome,

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Speaker 1: which is also very difficult to get a diagnosis for,

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Speaker 1: where you see these huge healthcare gaps, and also the

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Speaker 1: psychological side effects of having something a healthcare issue that

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Speaker 1: you cannot get a diagnosis for. This is from a

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Speaker 1: study at the Robert Wood Johnson Medical School courtesy of

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Speaker 1: the National Wolvedenia Association. It found that of women with

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Speaker 1: full vidennia feel out of control of their bodies. Sixty

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Speaker 1: report that it compromises their ability to enjoy life, and

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Speaker 1: six cannot have sexual intercourse because of the pain. So

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Speaker 1: while you're having to make all these different doctors appointments,

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Speaker 1: you are dealing with this psychological Smorga's board of negativity

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Speaker 1: right well, you know, speaking about fibromyalgia, h Dr William Ledger,

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Speaker 1: who was quoted in a New York Times article about this,

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Speaker 1: said that vulvidenia is a kind of vulver five bromyalgia,

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Speaker 1: and that most patients with volvidenia have very tender glands

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Speaker 1: at the entrance to the vagina. So we've talked about

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Speaker 1: inflammation and tinder glands, and recent studies have shown up

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Speaker 1: to a tenfold increase in the density of nerve endings

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Speaker 1: in what is called the vulver vestibule. And it's possible

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Speaker 1: that you could be born that way, or that you

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Speaker 1: could be having an inflammatory response to something such as

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Speaker 1: hormonal changes or contraceptives, or it could be that women

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Speaker 1: aren't producing enough of a substance response to a yeast

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Speaker 1: or bacteria invasion, heightening the risk of a chronic infection,

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Speaker 1: which is probably one of the reasons why that frisky

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Speaker 1: writer that you mentioned talks about reducing sugar in her diet,

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Speaker 1: wearing cotton underwear, and avoiding soaps with fragrance. Right, And

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Speaker 1: there is an interesting connection that I I don't personally

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Speaker 1: quite understand between frequent yeast infections and vaginitis and volvidenia.

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Speaker 1: It seems to be one of the risk factors for

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Speaker 1: developing this condition UM. And there's also the issue of

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Speaker 1: pelvic weakness. A lot of the therapies for volbadenia involved

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Speaker 1: strengthening pelvic floor muscles that might be weakened, and because

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Speaker 1: their weakened, their pain receptors, like the nerve endings in

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Speaker 1: their pelvis are essentially on edge, so they're far more sensitive.

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Speaker 1: And this all relates back to UM on an anatomical level,

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Speaker 1: to the pudendal nerve that is transmitting pain messages and

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Speaker 1: other sensations from the vulva. So the root of that

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Speaker 1: pain is ultimately all of those nerves down there. So

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Speaker 1: just someone have maybe a tendency to have very sensitive nerves,

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Speaker 1: I wonder it could be that UM well. And also

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Speaker 1: one thing that has been largely ruled out is the

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Speaker 1: notion that wolvedenia is related to sexual abuse. That used

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Speaker 1: to be one of the kind of knee jerk assumptions

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Speaker 1: that they've had trauma. Yes, so there's some kind of

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Speaker 1: sexual trauma um and where that can be the situation,

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Speaker 1: a lot of times it is not. There is a

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Speaker 1: study from the Journal of Reproductive Medicine in nineteen seven

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Speaker 1: which is a little dated, but it found no evidence

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Speaker 1: that women with valvedenia experience a higher incidence of sexual

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Speaker 1: or physical abuse during childhood and in six percent of women,

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Speaker 1: a minority, but still six percent of women. The symptom

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Speaker 1: onset happens before the age of thirty five, and I

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Speaker 1: want to say that the window for the onset of

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Speaker 1: wolvidenia is twenty five to thirty five. That's when a

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Speaker 1: lot of these cases come up, right. And the the

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Speaker 1: head of the Valvedenia association that you've mentioned earlier, um

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Speaker 1: she said that she had been experiencing symptoms for about

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Speaker 1: fifteen years and when she hit forty they just exploded.

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Speaker 1: So I'm just wondering if there's not something really hormonal related.

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Speaker 1: Of course, I'm sure it's different for for everybody, because

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Speaker 1: you know, valvedenia is not a disease, you know, as

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Speaker 1: go ask Alice says, I love that site. Um, it's

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Speaker 1: a general term that defines pain through a woman's pelvic area. Right.

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Speaker 1: There was a quote in the New York Times from

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Speaker 1: Dr William Ledger, who's a professor emeritus of obstet tricks

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Speaker 1: and Gynecology at the Wheel Medical College of Cornell, and

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Speaker 1: he's an expert on volvidenia. That was quite a title.

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Speaker 1: Well done, Dr Ledger, But he told the Times, it's

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Speaker 1: clear that there are subdivisions of this condition. One diagnosis

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Speaker 1: doesn't fit everyone. And like you said, he goes on

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Speaker 1: to talk about how it's kind of like vulver fibromyalgia. Um.

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Speaker 1: But what about treatments. So we've talked about how uncomfortable

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Speaker 1: it is, how many people suffer from it and just

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Speaker 1: go on suffering from it. Um. There are there is

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Speaker 1: a surgery option, however, I mean it's not open to everyone.

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Speaker 1: But during the surgery they remove a layer of tissue

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Speaker 1: containing an overabundance of nerve endings and UM. Going back

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Speaker 1: to Dr Ledger, he was talking about this inflammation and

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Speaker 1: he says that using a dermatological instrument, we're seeing my

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Speaker 1: to more widespread inflammation than appears to the naked eye.

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Speaker 1: So we talked about how you know there there's more

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Speaker 1: inflammation than you can necessarily see if you just uh

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Speaker 1: look at the volva, just examine it um. And while

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Speaker 1: women treated with estrogen or steroids looked better on the surface,

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Speaker 1: there's symptoms were actually only better because there's still so

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Speaker 1: much inflammation of the tissue and so that you can

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Speaker 1: have surgery to remove that, but that's definitely not the

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Speaker 1: only option. And while it might seem like a no

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Speaker 1: brainer that oh, hey, yeah, doctors should look underneath the

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Speaker 1: skin to see whether or not there's something going on there,

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Speaker 1: we have not mentioned that one of the primary tests

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Speaker 1: for volvadenia is called a Q tip test, which basically

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Speaker 1: involves running a Q tip around the vulver region to

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Speaker 1: test for pain sensitivity. There is a treatment that involves

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Speaker 1: inhibiting the firing of the pudendul nerve that you mentioned earlier,

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Speaker 1: and that innervates the lowest muscles of the pelvis, and

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Speaker 1: sometimes that is combined with regular use of an anti

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Speaker 1: convulsant drug, and there are drugs that can be used

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Speaker 1: off label in this case, and drugs like hydroxyzine which

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Speaker 1: relieves itching, or gaba penton, which controls seizures. Right, because,

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Speaker 1: one compounding symptom of volvidenia is something called vaginismus, which

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Speaker 1: are spasms in the muscles around your vagina. So not

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Speaker 1: only do you have those sensitive nerve endings, you're also

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Speaker 1: dealing with muscle spasms. I don't even know how they concentrate. No, well,

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Speaker 1: I mean they can't even sit at you know, if

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Speaker 1: that's going on. You can't even sit at your desk

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Speaker 1: for a long time without major discomfort. Right. Uh. Antidepressants

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Speaker 1: are often prescribed in this case too, although usually at

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Speaker 1: a lower dose than people who are actually using them

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Speaker 1: for depression. Um. Yeah, and I mentioned anti convulsants to

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Speaker 1: help less in chronic pain. Um, there's biofeedback therapy which

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Speaker 1: can help reduce pain by teaching you how to control

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Speaker 1: specific body responses. So that would help. That would hopefully

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Speaker 1: help women suffering from this relax to decrease the pain sensation.

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Speaker 1: And Caroline, you mentioned earlier that the writer for Frisky

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Speaker 1: mentioned lightocaine ointment, and this is a pretty common topical

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Speaker 1: treatment for volvidenia, which you would normally just put on

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Speaker 1: before you go to bed like thirty minutes or thirty

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Speaker 1: minutes before sexual intercourse to reduce discomfort. And according to

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Speaker 1: the Volvidenia guidelines, which was a very comprehensive overview of

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Speaker 1: the condition. UM they cited one study finding that after

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Speaker 1: seven weeks of lydocaine use of women were able to

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Speaker 1: have intercourse, compared with only thirty six percent at the baseline,

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Speaker 1: and that was using the overnight topical lydocaine. That's interesting.

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Speaker 1: So the thing is treatments can work. It's just it's

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Speaker 1: a matter of getting the diagnosis so that you can

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Speaker 1: even start finding a treatment exactly. Um, there's the pelvic

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Speaker 1: floor therapy, which we talked about. UM they two thousand

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Speaker 1: study found that eight percent of patients reported no volver

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Speaker 1: pain after the sounds scary after surface electromyography assisted pelvic

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Speaker 1: floor muscle rehabilitation. And that's just a fancy way of

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Speaker 1: saying that they put electrodes um both I think inside

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Speaker 1: the vagina and on the volva, uh, just to test

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Speaker 1: what's going on with the muscles when they're stimulated, and

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Speaker 1: so you know, and they recommend cagal exercises just to

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Speaker 1: strengthen those pelvic muscles. And I wonder how this might

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Speaker 1: relate to childbirth. That is, pregnancy is um one thing

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Speaker 1: that has been connected to the onset of volvidenia, because

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Speaker 1: maybe having a baby might weaken some of those pelvic

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Speaker 1: muscles um and again coming from the Volverdenia guideline. In

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Speaker 1: a study on pelvic floor therapy effectiveness, twenty two out

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Speaker 1: of twenty eight women studied return from abstinence to sexual

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Speaker 1: activity after they had been through therapy, and of that

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Speaker 1: same group reported being pain free at six months. So

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Speaker 1: it clearly doesn't work for everyone, unfortunately. But I mean

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Speaker 1: that's but again it's going back to Dr Ledger at

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Speaker 1: Cornell who said that there is no blanket prescription for everybody.

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Speaker 1: You you most likely have to have a combination of

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Speaker 1: these things and to address those psychological issues that we

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Speaker 1: were talking about earlier. The Wolvedenia guideline also emphasizes that

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Speaker 1: when managing patients with a condition, psycho sexual and psychological

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Speaker 1: issues must be considered in addition to the patient's other needs.

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Speaker 1: Because if you're imagine if you are in a relationship

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Speaker 1: with someone in general, and it's not only affecting you,

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Speaker 1: it's also probably affecting a relationship of intercourse hurts, and

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Speaker 1: then there's a question probably of whether or not it's

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Speaker 1: desire or whether it's something physical. So there's just so

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Speaker 1: much wrapped up with it. I would I think I

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Speaker 1: would be nervous all the time, you know, like, oh

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Speaker 1: my gosh, is it going to you know? I don't know.

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Speaker 1: Does it come in waves for some people? Does it?

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Speaker 1: I mean, or does it always at a constant level

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Speaker 1: of pain? I don't know. I would just feel like, oh,

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Speaker 1: I cannot get relief from this. So there would definitely

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Speaker 1: be a psychological issue there of a fear of oh

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Speaker 1: my gosh, is it gonna hurt more later? Why, you know,

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Speaker 1: I can't have sex with my boyfriend, you know, and

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Speaker 1: public awareness of aldenia. Even though the National Institutes of

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Speaker 1: Health is putting more emphasis on research and public awareness

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Speaker 1: for it, it's still not talked about very often. And

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Speaker 1: I don't think a lot of people know what it is. Yeah,

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Speaker 1: I I didn't. I meant I did not. The National

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Speaker 1: Institutes of Health refers to the women affected as a

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Speaker 1: hidden multitude and it's time for them to come out

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Speaker 1: of the shadows. Yeah. I want to hear about it.

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Speaker 1: I want to hear your our listeners experience with their

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Speaker 1: doctors if they've been mm hmm. Because I feel like

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Speaker 1: the best thing that we can do, um is educate

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Speaker 1: people about it. Educate yourself about it, because you know

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Speaker 1: it has to be an unsettling set of symptoms to

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Speaker 1: come on. But just to reemphasize one more time before

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Speaker 1: we wrap up, wolvednia is neither an STD nor is

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Speaker 1: it a lack of sexual desire or sexual phobia or

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Speaker 1: a sign of cancer. Correct. Yeah, absolutely, Let's let's close

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Speaker 1: this healthcare gap. Let's let's get women to their doctors.

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Speaker 1: Let's get women talking about it, because we just seem

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Speaker 1: to have all these issues with our doctors that they

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Speaker 1: think we're crazy when we come to them for problems, right,

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Speaker 1: And and that's the question is it. Are women not

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Speaker 1: going to their doctors or our doctors not listening to women.

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Speaker 1: I have a feeling it's a little bit of both, um.

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Speaker 1: But again, I think the more that we educate ourselves,

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Speaker 1: the better we will all be in the public and

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Speaker 1: in the medical community. So if you have something to

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Speaker 1: contribute to this conversation, please let us know. And any

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Speaker 1: medical professionals out there who have some clinical insight on Wolvedenia.

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Speaker 1: We would love to hear from you too. For everyone listening.

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Speaker 1: Our new email address is mom stuff at Discovery dot com.

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Speaker 1: That's mom stuff at Discovery dot com. And I've got

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Speaker 1: a quick email here from Grace in response to our

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Speaker 1: episode are Terrifying episode on Soda. Grace is eleven years

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Speaker 1: old and she is a to year listener, first time writer.

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Speaker 1: Hello Grace, this will be short and sweet. I love

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Speaker 1: your podcast and just today I was listening to the

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Speaker 1: Soda podcast and was surprised to find that soda was bad.

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Speaker 1: My mother lost over fifty pounds drinking diet pepsi. Now

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Speaker 1: I have a feeling that there might be more to

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Speaker 1: it than diet pepsi. But there you have it. Interesting

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Speaker 1: that goes against everything he said. Um and this is

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Speaker 1: an email from Rachel about our exercise podcast. She says,

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Speaker 1: I'm a twenty two year old female college student who

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Speaker 1: has been working out daily for the past two years.

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Speaker 1: I enjoy listening to podcasts while working out and just

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Speaker 1: happen to catch your latest episode on exercise. My motivation

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Speaker 1: to exercise comes from my boyfriend. We have motivated one

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Speaker 1: another from the beginning, always pushing each other to take

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Speaker 1: it one step further to reach our health and fitness goals.

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Speaker 1: I suppose a bit of competition comes into play as well. Now,

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Speaker 1: although we currently live in different places, we still talk

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Speaker 1: about our workouts and continue to support and encourage one another.

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Speaker 1: On another note, I work out more than he does.

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Speaker 1: Very good to know. I I feel like I need

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Speaker 1: to work out, buddy. I feel like that would help

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Speaker 1: me work out. We're getting a lot of inspirational exercise

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Speaker 1: emails from listeners. Caroline. If if I get just like

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Speaker 1: fifty more, I feel like maybe I'll finally start working out.

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Speaker 1: Maybe you should start some kind of support group. I

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Speaker 1: think I think our listeners should start to get Caroline

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Speaker 1: working out campaign to make me feel loved and support it.

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Speaker 1: But then you would have to post pictures of you

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Speaker 1: in some like awesome eighties. I'm absolutely going to wear

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Speaker 1: one of those like swishy swishy workout suits, you know,

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Speaker 1: the neon. My mom had many of those, how I

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Speaker 1: had many of those as a child. She probably still does.

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Speaker 1: Maybe I can bring one tomorrow. I bring one over

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Speaker 1: for you. So in the meantime, again, if you have

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Speaker 1: anything to send our way, Mom. Stuff at Discovery dot

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Speaker 1: Com is the email address. You can always hit us

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Speaker 1: up on Facebook, say hello, leave a comment, or chat

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Speaker 1: us up on Twitter at Mom's Stuff Podcast, and of

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Speaker 1: course you can hang out on the blog during the week.

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Speaker 1: It's stuff Mom Never told You at how Stuff works

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Speaker 1: dot com. Be sure to check out our new video podcast,

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Speaker 1: Stuff from the Future. Join how stup Work staff as

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Speaker 1: we explore the most promising and perplexing possibilities of tomorrow.

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Speaker 1: The house Stuff Works iPhone app has a ride. Download

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Speaker 1: it today on iTunes, brought to you by the reinvented

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