February 6, 2012 • 23 mins
What is vulvodynia? How many women suffer from vulvodynia? How do vulvodynia treatments work? Tune in to learn more in this episode.
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Speaker 1 (00:00):
Brought to you by the reinvented two thousand twelve camera.
It's ready. Are you welcome to stuff Mom never told you?
From House Stepworks dot Com. Hello, and welcome to the podcast.
I'm Kristen and I'm Caroline, and today we are talking
(00:21):
about a condition that affects a ton of women, as
many as sixteen million in the United States alone, that
is not talked about very often, which is precisely why
we wanted to talk about it today. Exactly. I had
no idea what it was. I've never heard of it
when you suggested it, and I have a feeling that
(00:43):
a lot of listeners too, will have never heard of volvidenia.
Volvo what exactly? Exactly? According to the International Society for
the Study of Volvo Vaginal Disease, volvidenia is defined as
volver discomfort in the ab sense of gross anatomic or
neurologic findings. In other words, it's when your volva hurts.
(01:07):
It's pain, it hurts, it's a pain in the volva,
and a lot of times it is characterized by painful intercourse.
But we should go ahead and say right out of
the gate, the volvadinia is not a sexual dysfunction in
terms of lack of desire. Right, It's not that women
with wolvedenia do not want to have sexual contact. It's
(01:30):
that because sexual contact hurts, they might not want to
engage in it. And it is also not a sexually
transmitted disease, correct, And if you are experiencing some of
these symptoms that go along with volvedenia, you you might
think that it's a sexually transmitted disease because it's characterized
by chronic pain, burning, irritation in the area around the
(01:53):
opening of your vagina, which is the vulva, and there
is no identifiable cause, and it can last month, years,
or forever, depending on what kind you're suffering from. And
it's not just painful intercourse. There might be pain associated
with inserting tampons, undergoing public exams, even wearing tight jenes,
or riding a bicycle or sitting at your desk for
(02:16):
a long time. Yeah, people with boldenia frequently can't sit
still for long periods than to get up walk around.
And there's been a lot of um talk on the
internet from people who have experienced this because they're not
actually getting much help from their doctors, and so they're
having to form these communities online to share advice. And
this might sound like a rare condition. You know, there
(02:38):
might be people out there thinking, so it hurts to
wear tight genes that can't affect many people. Well, friendly
listener out there who is incredulous at the moment, I
am about to change your mind. According to a National
Institutes of Health Finance study conducted at our Red University,
(03:01):
they projected the incident's rate of volvidenia at one in
six women. That's thirteen million, one in six. Well that's
American women, yes, American women. Um. And then there's Dr
Oz who he actually had a segment on one of
his shows about volvidenia in the no embarrassment zone and um,
(03:22):
according to his numbers, and he had a gynecologist on
talking about this, six million American women experience this and
sixteen percent will experience it at some point, and so
you know, the numbers differ. But it's just one of
those things that's probably it's underreported because maybe women are
embarrassed to go to their doctor about it. They don't
know what it is. They think, oh, it'll go away,
(03:43):
or it's just something I'm going to live with, you know,
or their doctors are dismissive and don't know what it
is um. And the question is, maybe, well, what does
what does volvidenia look like? Surely there's some kind of
physical sign. Uh no, there is not. Actually, volvidenia looks
like a normal and you know, even though every vagina
(04:04):
is different, but it looks like a healthy I should
say vulva. Right. It's not until doctors actually look below
the surface that they can tell that there is a
lot of inflammation, more so than in the normal and
well quote unquote normal volva um. And there are a
few different types of volvadinia. This is a breakdown coming
(04:27):
from the Mayo clinic. It might be generalized, which would
involve pain around the entire volver area, or volvadenia could
be localized to a specific area, such as around the
vaginal opening or the clutter us. Right, and there's volver
vest vestibulitis. Sorry, I totally stumbled over that, which is
pain only when pressure is applied to the area surrounding
(04:50):
the entrance to your vagina. And there was an interesting
column on the Frisky that I saw. Writer Sally McGraw
was diagnosed with this, but only after she went to
several doctors, and they all told her different things. You know,
they all treated her for yeast infections, they treated her
for you know, more of the general pain, until one
doctor finally said, oh, well, this is what you have, UM.
(05:12):
And some of her advice for for fellow sufferers. She
cut out sugar or most sugar from her diet because
she says that reduces glucoast in her system, which reduces
the likelihood of yeast infections. She switched to cotton underwear,
stop using pantyliners, because it's very important when you have
volvidenia or any of these types local or generalized, to
(05:34):
try to keep your vagina as cool and dry as possible,
so obviously, you know, not wearing tight pants, UM. And
she uses light a cane for bad days when it's
either really bad she's having a really bad flare up
or before sexual intercourse. And she also switched to mild
fragrance free soap because she figures and maybe with the
advice of her doctor, that fewer unnatural substances on her
(05:57):
body certainly couldn't hurt. And you mentioned that she went
to a number of doctors, and that is such a
common situation for women who are trying to get a
diagnosis for wolveadenia and probably you don't know what exactly
is going on um and it's not uncommon. According to
(06:18):
a study from Harvard, sixty of women consulted at least
three doctors seeking a diagnosis, and astoundingly, forty of those
who seek professional help remain undiagnosed even after three medical consultations.
And that's coming from the National Wolvedenia Association. And good
(06:40):
the good news is finally, in two thousand six, the
American College of Obstetricians and Gynecologists and the American Academy
of Family Physicians finally realized, hey, you know what, a
lot of our doctors are not informed about wolvidenia, and
so they sent information to a hundred and fifty thousand
of their members alerting them to the proper die gnosis
(07:00):
of wolvidenia in the best ways to treat it. But nevertheless,
coming from a New York Times article from two thousand
and ten, I believe it could take up to six
different doctors for the average woman. I can't imagine, I mean,
can you imagine being in such pain and discomfort and
going to people having them be like, I don't know,
(07:22):
maybe you should just try something like that. I mean,
you know, I get some good advice. That's hard. Well,
and you have to imagine too that if you are
suffering from wolvedenia, getting a pelvic exam of cannot be
a pleasant experience. Um And echoing all of all of
what Kristen just said. In nineteen seventy study in the
Journal of American Medical Women's Association, nearly women chose not
(07:44):
to seek treatment at all. Um. That's that that number
has probably changed since then, but that's still a huge
chunk of people who are like, well, I guess I'm
just going to deal with it. And this reminds me
of the episodes that we've done on fibromyalgia, which affects
for more and the men, and also polycystic ovarian syndrome,
which is also very difficult to get a diagnosis for,
(08:08):
where you see these huge healthcare gaps, and also the
psychological side effects of having something a healthcare issue that
you cannot get a diagnosis for. This is from a
study at the Robert Wood Johnson Medical School courtesy of
the National Wolvedenia Association. It found that of women with
(08:28):
full vidennia feel out of control of their bodies. Sixty
report that it compromises their ability to enjoy life, and
six cannot have sexual intercourse because of the pain. So
while you're having to make all these different doctors appointments,
you are dealing with this psychological Smorga's board of negativity
(08:50):
right well, you know, speaking about fibromyalgia, h Dr William Ledger,
who was quoted in a New York Times article about this,
said that vulvidenia is a kind of vulver five bromyalgia,
and that most patients with volvidenia have very tender glands
at the entrance to the vagina. So we've talked about
inflammation and tinder glands, and recent studies have shown up
(09:11):
to a tenfold increase in the density of nerve endings
in what is called the vulver vestibule. And it's possible
that you could be born that way, or that you
could be having an inflammatory response to something such as
hormonal changes or contraceptives, or it could be that women
aren't producing enough of a substance response to a yeast
(09:32):
or bacteria invasion, heightening the risk of a chronic infection,
which is probably one of the reasons why that frisky
writer that you mentioned talks about reducing sugar in her diet,
wearing cotton underwear, and avoiding soaps with fragrance. Right, And
there is an interesting connection that I I don't personally
quite understand between frequent yeast infections and vaginitis and volvidenia.
(09:57):
It seems to be one of the risk factors for
developing this condition UM. And there's also the issue of
pelvic weakness. A lot of the therapies for volbadenia involved
strengthening pelvic floor muscles that might be weakened, and because
their weakened, their pain receptors, like the nerve endings in
their pelvis are essentially on edge, so they're far more sensitive.
(10:23):
And this all relates back to UM on an anatomical level,
to the pudendal nerve that is transmitting pain messages and
other sensations from the vulva. So the root of that
pain is ultimately all of those nerves down there. So
just someone have maybe a tendency to have very sensitive nerves,
(10:44):
I wonder it could be that UM well. And also
one thing that has been largely ruled out is the
notion that wolvedenia is related to sexual abuse. That used
to be one of the kind of knee jerk assumptions
that they've had trauma. Yes, so there's some kind of
sexual trauma um and where that can be the situation,
(11:04):
a lot of times it is not. There is a
study from the Journal of Reproductive Medicine in nineteen seven
which is a little dated, but it found no evidence
that women with valvedenia experience a higher incidence of sexual
or physical abuse during childhood and in six percent of women,
a minority, but still six percent of women. The symptom
onset happens before the age of thirty five, and I
(11:29):
want to say that the window for the onset of
wolvidenia is twenty five to thirty five. That's when a
lot of these cases come up, right. And the the
head of the Valvedenia association that you've mentioned earlier, um
she said that she had been experiencing symptoms for about
fifteen years and when she hit forty they just exploded.
So I'm just wondering if there's not something really hormonal related.
(11:50):
Of course, I'm sure it's different for for everybody, because
you know, valvedenia is not a disease, you know, as
go ask Alice says, I love that site. Um, it's
a general term that defines pain through a woman's pelvic area. Right.
There was a quote in the New York Times from
Dr William Ledger, who's a professor emeritus of obstet tricks
and Gynecology at the Wheel Medical College of Cornell, and
(12:13):
he's an expert on volvidenia. That was quite a title.
Well done, Dr Ledger, But he told the Times, it's
clear that there are subdivisions of this condition. One diagnosis
doesn't fit everyone. And like you said, he goes on
to talk about how it's kind of like vulver fibromyalgia. Um.
But what about treatments. So we've talked about how uncomfortable
(12:37):
it is, how many people suffer from it and just
go on suffering from it. Um. There are there is
a surgery option, however, I mean it's not open to everyone.
But during the surgery they remove a layer of tissue
containing an overabundance of nerve endings and UM. Going back
to Dr Ledger, he was talking about this inflammation and
he says that using a dermatological instrument, we're seeing my
(13:00):
to more widespread inflammation than appears to the naked eye.
So we talked about how you know there there's more
inflammation than you can necessarily see if you just uh
look at the volva, just examine it um. And while
women treated with estrogen or steroids looked better on the surface,
there's symptoms were actually only better because there's still so
(13:20):
much inflammation of the tissue and so that you can
have surgery to remove that, but that's definitely not the
only option. And while it might seem like a no
brainer that oh, hey, yeah, doctors should look underneath the
skin to see whether or not there's something going on there,
we have not mentioned that one of the primary tests
for volvadenia is called a Q tip test, which basically
(13:41):
involves running a Q tip around the vulver region to
test for pain sensitivity. There is a treatment that involves
inhibiting the firing of the pudendul nerve that you mentioned earlier,
and that innervates the lowest muscles of the pelvis, and
sometimes that is combined with regular use of an anti
convulsant drug, and there are drugs that can be used
(14:04):
off label in this case, and drugs like hydroxyzine which
relieves itching, or gaba penton, which controls seizures. Right, because,
one compounding symptom of volvidenia is something called vaginismus, which
are spasms in the muscles around your vagina. So not
only do you have those sensitive nerve endings, you're also
(14:26):
dealing with muscle spasms. I don't even know how they concentrate. No, well,
I mean they can't even sit at you know, if
that's going on. You can't even sit at your desk
for a long time without major discomfort. Right. Uh. Antidepressants
are often prescribed in this case too, although usually at
a lower dose than people who are actually using them
for depression. Um. Yeah, and I mentioned anti convulsants to
(14:49):
help less in chronic pain. Um, there's biofeedback therapy which
can help reduce pain by teaching you how to control
specific body responses. So that would help. That would hopefully
help women suffering from this relax to decrease the pain sensation.
And Caroline, you mentioned earlier that the writer for Frisky
mentioned lightocaine ointment, and this is a pretty common topical
(15:12):
treatment for volvidenia, which you would normally just put on
before you go to bed like thirty minutes or thirty
minutes before sexual intercourse to reduce discomfort. And according to
the Volvidenia guidelines, which was a very comprehensive overview of
the condition. UM they cited one study finding that after
(15:34):
seven weeks of lydocaine use of women were able to
have intercourse, compared with only thirty six percent at the baseline,
and that was using the overnight topical lydocaine. That's interesting.
So the thing is treatments can work. It's just it's
a matter of getting the diagnosis so that you can
(15:57):
even start finding a treatment exactly. Um, there's the pelvic
floor therapy, which we talked about. UM they two thousand
study found that eight percent of patients reported no volver
pain after the sounds scary after surface electromyography assisted pelvic
floor muscle rehabilitation. And that's just a fancy way of
(16:18):
saying that they put electrodes um both I think inside
the vagina and on the volva, uh, just to test
what's going on with the muscles when they're stimulated, and
so you know, and they recommend cagal exercises just to
strengthen those pelvic muscles. And I wonder how this might
relate to childbirth. That is, pregnancy is um one thing
(16:40):
that has been connected to the onset of volvidenia, because
maybe having a baby might weaken some of those pelvic
muscles um and again coming from the Volverdenia guideline. In
a study on pelvic floor therapy effectiveness, twenty two out
of twenty eight women studied return from abstinence to sexual
(17:02):
activity after they had been through therapy, and of that
same group reported being pain free at six months. So
it clearly doesn't work for everyone, unfortunately. But I mean
that's but again it's going back to Dr Ledger at
Cornell who said that there is no blanket prescription for everybody.
(17:25):
You you most likely have to have a combination of
these things and to address those psychological issues that we
were talking about earlier. The Wolvedenia guideline also emphasizes that
when managing patients with a condition, psycho sexual and psychological
issues must be considered in addition to the patient's other needs.
Because if you're imagine if you are in a relationship
(17:50):
with someone in general, and it's not only affecting you,
it's also probably affecting a relationship of intercourse hurts, and
then there's a question probably of whether or not it's
desire or whether it's something physical. So there's just so
much wrapped up with it. I would I think I
would be nervous all the time, you know, like, oh
my gosh, is it going to you know? I don't know.
(18:10):
Does it come in waves for some people? Does it?
I mean, or does it always at a constant level
of pain? I don't know. I would just feel like, oh,
I cannot get relief from this. So there would definitely
be a psychological issue there of a fear of oh
my gosh, is it gonna hurt more later? Why, you know,
I can't have sex with my boyfriend, you know, and
public awareness of aldenia. Even though the National Institutes of
(18:30):
Health is putting more emphasis on research and public awareness
for it, it's still not talked about very often. And
I don't think a lot of people know what it is. Yeah,
I I didn't. I meant I did not. The National
Institutes of Health refers to the women affected as a
hidden multitude and it's time for them to come out
(18:54):
of the shadows. Yeah. I want to hear about it.
I want to hear your our listeners experience with their
doctors if they've been mm hmm. Because I feel like
the best thing that we can do, um is educate
people about it. Educate yourself about it, because you know
it has to be an unsettling set of symptoms to
(19:14):
come on. But just to reemphasize one more time before
we wrap up, wolvednia is neither an STD nor is
it a lack of sexual desire or sexual phobia or
a sign of cancer. Correct. Yeah, absolutely, Let's let's close
this healthcare gap. Let's let's get women to their doctors.
Let's get women talking about it, because we just seem
(19:37):
to have all these issues with our doctors that they
think we're crazy when we come to them for problems, right,
And and that's the question is it. Are women not
going to their doctors or our doctors not listening to women.
I have a feeling it's a little bit of both, um.
But again, I think the more that we educate ourselves,
the better we will all be in the public and
(19:57):
in the medical community. So if you have something to
contribute to this conversation, please let us know. And any
medical professionals out there who have some clinical insight on Wolvedenia.
We would love to hear from you too. For everyone listening.
Our new email address is mom stuff at Discovery dot com.
That's mom stuff at Discovery dot com. And I've got
(20:23):
a quick email here from Grace in response to our
episode are Terrifying episode on Soda. Grace is eleven years
old and she is a to year listener, first time writer.
Hello Grace, this will be short and sweet. I love
your podcast and just today I was listening to the
(20:43):
Soda podcast and was surprised to find that soda was bad.
My mother lost over fifty pounds drinking diet pepsi. Now
I have a feeling that there might be more to
it than diet pepsi. But there you have it. Interesting
that goes against everything he said. Um and this is
an email from Rachel about our exercise podcast. She says,
(21:07):
I'm a twenty two year old female college student who
has been working out daily for the past two years.
I enjoy listening to podcasts while working out and just
happen to catch your latest episode on exercise. My motivation
to exercise comes from my boyfriend. We have motivated one
another from the beginning, always pushing each other to take
it one step further to reach our health and fitness goals.
I suppose a bit of competition comes into play as well. Now,
(21:29):
although we currently live in different places, we still talk
about our workouts and continue to support and encourage one another.
On another note, I work out more than he does.
Very good to know. I I feel like I need
to work out, buddy. I feel like that would help
me work out. We're getting a lot of inspirational exercise
emails from listeners. Caroline. If if I get just like
(21:49):
fifty more, I feel like maybe I'll finally start working out.
Maybe you should start some kind of support group. I
think I think our listeners should start to get Caroline
working out campaign to make me feel loved and support it.
But then you would have to post pictures of you
in some like awesome eighties. I'm absolutely going to wear
one of those like swishy swishy workout suits, you know,
(22:10):
the neon. My mom had many of those, how I
had many of those as a child. She probably still does.
Maybe I can bring one tomorrow. I bring one over
for you. So in the meantime, again, if you have
anything to send our way, Mom. Stuff at Discovery dot
Com is the email address. You can always hit us
up on Facebook, say hello, leave a comment, or chat
us up on Twitter at Mom's Stuff Podcast, and of
(22:32):
course you can hang out on the blog during the week.
It's stuff Mom Never told You at how Stuff works
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(22:55):
it today on iTunes, brought to you by the reinvented
two thousand twelve cameras. It's ready, are you
Brought to you by the reinvented two thousand twelve camera.
It's ready. Are you welcome to stuff Mom never told you?
From House Stepworks dot Com. Hello, and welcome to the podcast.
I'm Kristen and I'm Caroline, and today we are talking
(00:21):
about a condition that affects a ton of women, as
many as sixteen million in the United States alone, that
is not talked about very often, which is precisely why
we wanted to talk about it today. Exactly. I had
no idea what it was. I've never heard of it
when you suggested it, and I have a feeling that
(00:43):
a lot of listeners too, will have never heard of volvidenia.
Volvo what exactly? Exactly? According to the International Society for
the Study of Volvo Vaginal Disease, volvidenia is defined as
volver discomfort in the ab sense of gross anatomic or
neurologic findings. In other words, it's when your volva hurts.
(01:07):
It's pain, it hurts, it's a pain in the volva,
and a lot of times it is characterized by painful intercourse.
But we should go ahead and say right out of
the gate, the volvadinia is not a sexual dysfunction in
terms of lack of desire. Right, It's not that women
with wolvedenia do not want to have sexual contact. It's
(01:30):
that because sexual contact hurts, they might not want to
engage in it. And it is also not a sexually
transmitted disease, correct, And if you are experiencing some of
these symptoms that go along with volvedenia, you you might
think that it's a sexually transmitted disease because it's characterized
by chronic pain, burning, irritation in the area around the
(01:53):
opening of your vagina, which is the vulva, and there
is no identifiable cause, and it can last month, years,
or forever, depending on what kind you're suffering from. And
it's not just painful intercourse. There might be pain associated
with inserting tampons, undergoing public exams, even wearing tight jenes,
or riding a bicycle or sitting at your desk for
(02:16):
a long time. Yeah, people with boldenia frequently can't sit
still for long periods than to get up walk around.
And there's been a lot of um talk on the
internet from people who have experienced this because they're not
actually getting much help from their doctors, and so they're
having to form these communities online to share advice. And
this might sound like a rare condition. You know, there
(02:38):
might be people out there thinking, so it hurts to
wear tight genes that can't affect many people. Well, friendly
listener out there who is incredulous at the moment, I
am about to change your mind. According to a National
Institutes of Health Finance study conducted at our Red University,
(03:01):
they projected the incident's rate of volvidenia at one in
six women. That's thirteen million, one in six. Well that's
American women, yes, American women. Um. And then there's Dr
Oz who he actually had a segment on one of
his shows about volvidenia in the no embarrassment zone and um,
(03:22):
according to his numbers, and he had a gynecologist on
talking about this, six million American women experience this and
sixteen percent will experience it at some point, and so
you know, the numbers differ. But it's just one of
those things that's probably it's underreported because maybe women are
embarrassed to go to their doctor about it. They don't
know what it is. They think, oh, it'll go away,
(03:43):
or it's just something I'm going to live with, you know,
or their doctors are dismissive and don't know what it
is um. And the question is, maybe, well, what does
what does volvidenia look like? Surely there's some kind of
physical sign. Uh no, there is not. Actually, volvidenia looks
like a normal and you know, even though every vagina
(04:04):
is different, but it looks like a healthy I should
say vulva. Right. It's not until doctors actually look below
the surface that they can tell that there is a
lot of inflammation, more so than in the normal and
well quote unquote normal volva um. And there are a
few different types of volvadinia. This is a breakdown coming
(04:27):
from the Mayo clinic. It might be generalized, which would
involve pain around the entire volver area, or volvadenia could
be localized to a specific area, such as around the
vaginal opening or the clutter us. Right, and there's volver
vest vestibulitis. Sorry, I totally stumbled over that, which is
pain only when pressure is applied to the area surrounding
(04:50):
the entrance to your vagina. And there was an interesting
column on the Frisky that I saw. Writer Sally McGraw
was diagnosed with this, but only after she went to
several doctors, and they all told her different things. You know,
they all treated her for yeast infections, they treated her
for you know, more of the general pain, until one
doctor finally said, oh, well, this is what you have, UM.
(05:12):
And some of her advice for for fellow sufferers. She
cut out sugar or most sugar from her diet because
she says that reduces glucoast in her system, which reduces
the likelihood of yeast infections. She switched to cotton underwear,
stop using pantyliners, because it's very important when you have
volvidenia or any of these types local or generalized, to
(05:34):
try to keep your vagina as cool and dry as possible,
so obviously, you know, not wearing tight pants, UM. And
she uses light a cane for bad days when it's
either really bad she's having a really bad flare up
or before sexual intercourse. And she also switched to mild
fragrance free soap because she figures and maybe with the
advice of her doctor, that fewer unnatural substances on her
(05:57):
body certainly couldn't hurt. And you mentioned that she went
to a number of doctors, and that is such a
common situation for women who are trying to get a
diagnosis for wolveadenia and probably you don't know what exactly
is going on um and it's not uncommon. According to
(06:18):
a study from Harvard, sixty of women consulted at least
three doctors seeking a diagnosis, and astoundingly, forty of those
who seek professional help remain undiagnosed even after three medical consultations.
And that's coming from the National Wolvedenia Association. And good
(06:40):
the good news is finally, in two thousand six, the
American College of Obstetricians and Gynecologists and the American Academy
of Family Physicians finally realized, hey, you know what, a
lot of our doctors are not informed about wolvidenia, and
so they sent information to a hundred and fifty thousand
of their members alerting them to the proper die gnosis
(07:00):
of wolvidenia in the best ways to treat it. But nevertheless,
coming from a New York Times article from two thousand
and ten, I believe it could take up to six
different doctors for the average woman. I can't imagine, I mean,
can you imagine being in such pain and discomfort and
going to people having them be like, I don't know,
(07:22):
maybe you should just try something like that. I mean,
you know, I get some good advice. That's hard. Well,
and you have to imagine too that if you are
suffering from wolvedenia, getting a pelvic exam of cannot be
a pleasant experience. Um And echoing all of all of
what Kristen just said. In nineteen seventy study in the
Journal of American Medical Women's Association, nearly women chose not
(07:44):
to seek treatment at all. Um. That's that that number
has probably changed since then, but that's still a huge
chunk of people who are like, well, I guess I'm
just going to deal with it. And this reminds me
of the episodes that we've done on fibromyalgia, which affects
for more and the men, and also polycystic ovarian syndrome,
which is also very difficult to get a diagnosis for,
(08:08):
where you see these huge healthcare gaps, and also the
psychological side effects of having something a healthcare issue that
you cannot get a diagnosis for. This is from a
study at the Robert Wood Johnson Medical School courtesy of
the National Wolvedenia Association. It found that of women with
(08:28):
full vidennia feel out of control of their bodies. Sixty
report that it compromises their ability to enjoy life, and
six cannot have sexual intercourse because of the pain. So
while you're having to make all these different doctors appointments,
you are dealing with this psychological Smorga's board of negativity
(08:50):
right well, you know, speaking about fibromyalgia, h Dr William Ledger,
who was quoted in a New York Times article about this,
said that vulvidenia is a kind of vulver five bromyalgia,
and that most patients with volvidenia have very tender glands
at the entrance to the vagina. So we've talked about
inflammation and tinder glands, and recent studies have shown up
(09:11):
to a tenfold increase in the density of nerve endings
in what is called the vulver vestibule. And it's possible
that you could be born that way, or that you
could be having an inflammatory response to something such as
hormonal changes or contraceptives, or it could be that women
aren't producing enough of a substance response to a yeast
(09:32):
or bacteria invasion, heightening the risk of a chronic infection,
which is probably one of the reasons why that frisky
writer that you mentioned talks about reducing sugar in her diet,
wearing cotton underwear, and avoiding soaps with fragrance. Right, And
there is an interesting connection that I I don't personally
quite understand between frequent yeast infections and vaginitis and volvidenia.
(09:57):
It seems to be one of the risk factors for
developing this condition UM. And there's also the issue of
pelvic weakness. A lot of the therapies for volbadenia involved
strengthening pelvic floor muscles that might be weakened, and because
their weakened, their pain receptors, like the nerve endings in
their pelvis are essentially on edge, so they're far more sensitive.
(10:23):
And this all relates back to UM on an anatomical level,
to the pudendal nerve that is transmitting pain messages and
other sensations from the vulva. So the root of that
pain is ultimately all of those nerves down there. So
just someone have maybe a tendency to have very sensitive nerves,
(10:44):
I wonder it could be that UM well. And also
one thing that has been largely ruled out is the
notion that wolvedenia is related to sexual abuse. That used
to be one of the kind of knee jerk assumptions
that they've had trauma. Yes, so there's some kind of
sexual trauma um and where that can be the situation,
(11:04):
a lot of times it is not. There is a
study from the Journal of Reproductive Medicine in nineteen seven
which is a little dated, but it found no evidence
that women with valvedenia experience a higher incidence of sexual
or physical abuse during childhood and in six percent of women,
a minority, but still six percent of women. The symptom
onset happens before the age of thirty five, and I
(11:29):
want to say that the window for the onset of
wolvidenia is twenty five to thirty five. That's when a
lot of these cases come up, right. And the the
head of the Valvedenia association that you've mentioned earlier, um
she said that she had been experiencing symptoms for about
fifteen years and when she hit forty they just exploded.
So I'm just wondering if there's not something really hormonal related.
(11:50):
Of course, I'm sure it's different for for everybody, because
you know, valvedenia is not a disease, you know, as
go ask Alice says, I love that site. Um, it's
a general term that defines pain through a woman's pelvic area. Right.
There was a quote in the New York Times from
Dr William Ledger, who's a professor emeritus of obstet tricks
and Gynecology at the Wheel Medical College of Cornell, and
(12:13):
he's an expert on volvidenia. That was quite a title.
Well done, Dr Ledger, But he told the Times, it's
clear that there are subdivisions of this condition. One diagnosis
doesn't fit everyone. And like you said, he goes on
to talk about how it's kind of like vulver fibromyalgia. Um.
But what about treatments. So we've talked about how uncomfortable
(12:37):
it is, how many people suffer from it and just
go on suffering from it. Um. There are there is
a surgery option, however, I mean it's not open to everyone.
But during the surgery they remove a layer of tissue
containing an overabundance of nerve endings and UM. Going back
to Dr Ledger, he was talking about this inflammation and
he says that using a dermatological instrument, we're seeing my
(13:00):
to more widespread inflammation than appears to the naked eye.
So we talked about how you know there there's more
inflammation than you can necessarily see if you just uh
look at the volva, just examine it um. And while
women treated with estrogen or steroids looked better on the surface,
there's symptoms were actually only better because there's still so
(13:20):
much inflammation of the tissue and so that you can
have surgery to remove that, but that's definitely not the
only option. And while it might seem like a no
brainer that oh, hey, yeah, doctors should look underneath the
skin to see whether or not there's something going on there,
we have not mentioned that one of the primary tests
for volvadenia is called a Q tip test, which basically
(13:41):
involves running a Q tip around the vulver region to
test for pain sensitivity. There is a treatment that involves
inhibiting the firing of the pudendul nerve that you mentioned earlier,
and that innervates the lowest muscles of the pelvis, and
sometimes that is combined with regular use of an anti
convulsant drug, and there are drugs that can be used
(14:04):
off label in this case, and drugs like hydroxyzine which
relieves itching, or gaba penton, which controls seizures. Right, because,
one compounding symptom of volvidenia is something called vaginismus, which
are spasms in the muscles around your vagina. So not
only do you have those sensitive nerve endings, you're also
(14:26):
dealing with muscle spasms. I don't even know how they concentrate. No, well,
I mean they can't even sit at you know, if
that's going on. You can't even sit at your desk
for a long time without major discomfort. Right. Uh. Antidepressants
are often prescribed in this case too, although usually at
a lower dose than people who are actually using them
for depression. Um. Yeah, and I mentioned anti convulsants to
(14:49):
help less in chronic pain. Um, there's biofeedback therapy which
can help reduce pain by teaching you how to control
specific body responses. So that would help. That would hopefully
help women suffering from this relax to decrease the pain sensation.
And Caroline, you mentioned earlier that the writer for Frisky
mentioned lightocaine ointment, and this is a pretty common topical
(15:12):
treatment for volvidenia, which you would normally just put on
before you go to bed like thirty minutes or thirty
minutes before sexual intercourse to reduce discomfort. And according to
the Volvidenia guidelines, which was a very comprehensive overview of
the condition. UM they cited one study finding that after
(15:34):
seven weeks of lydocaine use of women were able to
have intercourse, compared with only thirty six percent at the baseline,
and that was using the overnight topical lydocaine. That's interesting.
So the thing is treatments can work. It's just it's
a matter of getting the diagnosis so that you can
(15:57):
even start finding a treatment exactly. Um, there's the pelvic
floor therapy, which we talked about. UM they two thousand
study found that eight percent of patients reported no volver
pain after the sounds scary after surface electromyography assisted pelvic
floor muscle rehabilitation. And that's just a fancy way of
(16:18):
saying that they put electrodes um both I think inside
the vagina and on the volva, uh, just to test
what's going on with the muscles when they're stimulated, and
so you know, and they recommend cagal exercises just to
strengthen those pelvic muscles. And I wonder how this might
relate to childbirth. That is, pregnancy is um one thing
(16:40):
that has been connected to the onset of volvidenia, because
maybe having a baby might weaken some of those pelvic
muscles um and again coming from the Volverdenia guideline. In
a study on pelvic floor therapy effectiveness, twenty two out
of twenty eight women studied return from abstinence to sexual
(17:02):
activity after they had been through therapy, and of that
same group reported being pain free at six months. So
it clearly doesn't work for everyone, unfortunately. But I mean
that's but again it's going back to Dr Ledger at
Cornell who said that there is no blanket prescription for everybody.
(17:25):
You you most likely have to have a combination of
these things and to address those psychological issues that we
were talking about earlier. The Wolvedenia guideline also emphasizes that
when managing patients with a condition, psycho sexual and psychological
issues must be considered in addition to the patient's other needs.
Because if you're imagine if you are in a relationship
(17:50):
with someone in general, and it's not only affecting you,
it's also probably affecting a relationship of intercourse hurts, and
then there's a question probably of whether or not it's
desire or whether it's something physical. So there's just so
much wrapped up with it. I would I think I
would be nervous all the time, you know, like, oh
my gosh, is it going to you know? I don't know.
(18:10):
Does it come in waves for some people? Does it?
I mean, or does it always at a constant level
of pain? I don't know. I would just feel like, oh,
I cannot get relief from this. So there would definitely
be a psychological issue there of a fear of oh
my gosh, is it gonna hurt more later? Why, you know,
I can't have sex with my boyfriend, you know, and
public awareness of aldenia. Even though the National Institutes of
(18:30):
Health is putting more emphasis on research and public awareness
for it, it's still not talked about very often. And
I don't think a lot of people know what it is. Yeah,
I I didn't. I meant I did not. The National
Institutes of Health refers to the women affected as a
hidden multitude and it's time for them to come out
(18:54):
of the shadows. Yeah. I want to hear about it.
I want to hear your our listeners experience with their
doctors if they've been mm hmm. Because I feel like
the best thing that we can do, um is educate
people about it. Educate yourself about it, because you know
it has to be an unsettling set of symptoms to
(19:14):
come on. But just to reemphasize one more time before
we wrap up, wolvednia is neither an STD nor is
it a lack of sexual desire or sexual phobia or
a sign of cancer. Correct. Yeah, absolutely, Let's let's close
this healthcare gap. Let's let's get women to their doctors.
Let's get women talking about it, because we just seem
(19:37):
to have all these issues with our doctors that they
think we're crazy when we come to them for problems, right,
And and that's the question is it. Are women not
going to their doctors or our doctors not listening to women.
I have a feeling it's a little bit of both, um.
But again, I think the more that we educate ourselves,
the better we will all be in the public and
(19:57):
in the medical community. So if you have something to
contribute to this conversation, please let us know. And any
medical professionals out there who have some clinical insight on Wolvedenia.
We would love to hear from you too. For everyone listening.
Our new email address is mom stuff at Discovery dot com.
That's mom stuff at Discovery dot com. And I've got
(20:23):
a quick email here from Grace in response to our
episode are Terrifying episode on Soda. Grace is eleven years
old and she is a to year listener, first time writer.
Hello Grace, this will be short and sweet. I love
your podcast and just today I was listening to the
(20:43):
Soda podcast and was surprised to find that soda was bad.
My mother lost over fifty pounds drinking diet pepsi. Now
I have a feeling that there might be more to
it than diet pepsi. But there you have it. Interesting
that goes against everything he said. Um and this is
an email from Rachel about our exercise podcast. She says,
(21:07):
I'm a twenty two year old female college student who
has been working out daily for the past two years.
I enjoy listening to podcasts while working out and just
happen to catch your latest episode on exercise. My motivation
to exercise comes from my boyfriend. We have motivated one
another from the beginning, always pushing each other to take
it one step further to reach our health and fitness goals.
I suppose a bit of competition comes into play as well. Now,
(21:29):
although we currently live in different places, we still talk
about our workouts and continue to support and encourage one another.
On another note, I work out more than he does.
Very good to know. I I feel like I need
to work out, buddy. I feel like that would help
me work out. We're getting a lot of inspirational exercise
emails from listeners. Caroline. If if I get just like
(21:49):
fifty more, I feel like maybe I'll finally start working out.
Maybe you should start some kind of support group. I
think I think our listeners should start to get Caroline
working out campaign to make me feel loved and support it.
But then you would have to post pictures of you
in some like awesome eighties. I'm absolutely going to wear
one of those like swishy swishy workout suits, you know,
(22:10):
the neon. My mom had many of those, how I
had many of those as a child. She probably still does.
Maybe I can bring one tomorrow. I bring one over
for you. So in the meantime, again, if you have
anything to send our way, Mom. Stuff at Discovery dot
Com is the email address. You can always hit us
up on Facebook, say hello, leave a comment, or chat
us up on Twitter at Mom's Stuff Podcast, and of
(22:32):
course you can hang out on the blog during the week.
It's stuff Mom Never told You at how Stuff works
dot com. Be sure to check out our new video podcast,
Stuff from the Future. Join how stup Work staff as
we explore the most promising and perplexing possibilities of tomorrow.
The house Stuff Works iPhone app has a ride. Download
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