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Some thoughts and information from the Boston University Medical Center lecture last night
Lis and I went to a lecture on "Women without orgasm: now or not ever" presented by the Institute for Sexual Medicine at the Boston University Medical Center last night. As usual, the general topic was sort of explored, but the basic point of, at least, Dr. Goldstein's part of the lecture was to inform people of the findings and new discoveries that the ISM was making.
Which is fascinating stuff. The ISM has two parts, a basic research department, which is doing clinical research, animal trials, and so forth, and a treatment clinic. These two sections are closely tied together, and each benefits from the experiences of the other.
The lecture consisted of four parts -- one of the psychiatrists did a presentation on the psychological factors, a patient spoke about her experiences, Dr. Goldstein did a lecture on some of the most recent findings they'd uncovered, and then questions-and-answers.
The psychological part was nothing new. I mean, in all honesty, there's been no real progress in the psychological treatment of sexual dysfunction in years. Obviously, it's important, and there are a couple things they're doing a little better than they used to -- an improved Sexual Distress Scale questionaire, stuff like that. But nothing really exciting.
But the physiological side. . . that's just amazing what they're doing. It's a completely new field. They're discovering things about how hormones work, what they are, what they do, what affects what . . . stuff that's never been studied before.
As people who know Lis and me know, we've been in treatment for Lis's sexual dysfunction for years. We started out with psychological treatment, and, after years of this, discovered that Lis has no emotional or psychological traumas, has a perfectly fine body image, no sexual hangups, and no sex drive.
The entire field of actually studying what can go wrong PHYSICALLY with women's sexual responses only started five years ago.
Almost everything can be traced back to hormone levels. But it's amazing just how many things those hormone levels impact, and in how many ways.
Okay, obviously, low testosterone leads to low desire. Fine. We knew that. But it goes on from there. . .
Screwed-up hormone levels lead to the inside lining of the vagina all but going away. That's the part that lubricates. So, if you don't have the right hormones, you lack most of the part of the body that causes lubrication. And the amount of lubrication it secretes has a higher water percentage and lower mucus percentage than if the hormone levels are working -- so it's a lousy lubricant anyway.
The hymenal opening has vestigial musk glands around it -- they also produce some lubrication, but basically, once upon a time, they were musk glands. With proper hormones, they produce mucus and clean themselves out. With low androgens, they don't produce mucus, and become a haven for bacteria, which settle in and cause infections. Imagine how painful intercourse would be if you had swolen infected glands surrounding your vaginal area. . . Lis doesn't have to imagine this. . .
Those were things we'd heard about previously (the actual animal studies on rats on the inside of the vaginal lining were new, but that was suspected last time we'd heard this). And they'd discovered the vaginal glands the last time we saw them.
But they found out a number of new things about neuron activity and androgens.
The nerves in the genital area require testosterone to function.
So, if you have no, or very low, testosterone, you have less feeling in your genitals.
Basically, Lis might have as much feeling in her clitoris as most people have in their forehead.
You know how difficult it is to give someone an orgasm by licking their forehead?
No wonder she's never had an orgasm.
It's not my fault.
Anyway -- why does this happen? Well, that's not known yet. But they're starting to come up with hypotheses. . .
(Just a quick reminder of how steroidal hormones work -- the body takes cholesterol, then whaps it around a bit, and it turns into DHEA, and then the body takes the DHEA and whaps it around and turns it into testosterone. It goes through other pathways, too, turns into various things in between, and estrogens are made and stuff like that. I'd need a chart to follow exactly what turns into what how, but that's the basic idea. Stuff turns from cholesterol into other stuff, and that other stuff turns into Stuff You Need.)
Apparently, testosterone is produced in like two different places in a woman's body -- I don't remember exactly where, and I wasn't taking notes, but I think they were like the adrenal gland and the pituitary gland. Birth control pills completely shut of testosterone production from one of these. Not only that, but they also produce a secondary something-or-other which bonds to free testosterone and neutralizes it.
So -- they cut off like half your production of testosterone, and neutralize a good chunk of the rest of it.
If you manage to make so much testosterone that, even after losing over half of it, you still have enough testosterone to maintain neural pathways to your genitals, and maintain the vaginal wall thickness, and maintain the health of those glands, and all those other things, then you're fine. But if you don't, you're fucked. Or, more to the point, you're NOT fucked.
Oh, and once that gland has been told not to produce testosterone for long enough, it won't. Even if you go off of birth control pills. That function of it is just plain dead. It's been destroyed.
Again, if you manage to produce enough testosterone anyway, this isn't really that bad. But, if you don't, Everything Dies. Desire, ability, lubrication, the triggering chemicals in the brain that tell you to have an orgasm, the sensation in the genitals, the bits of the hymenal glands that keep it from becoming painfully infected -- it ALL GOES AWAY.
Now, it seems that there are other things out there that can cause a lack of testosterone in women, besides birth control pills. But I can't help but wonder if the sharp increase in the reported incidence of sexual dysfunction in women comes, at least partially, from the point when birth control pills became so prevalent that women could be given them very shortly after the onset of menses. Lis was on birth control pills by her third period or so -- her body CAN'T have finished figuring out how to manufacure all the hormones it would need as an adult by that point. And now it never will.
Obviously, you'd need to do a large-scale study to find out if there is any correlation between the age at which women went on the Pill and sexual dysfunction. But it seems like it would be a reasonable hypothesis.
So, anyway -- what can you do about it? You can take DHEA suppliments. Those are not only over-the-counter, they're not even counted as DRUGS by the FDA. Which is bad. Because if a bottle says "25 mg of DHEA", there's no way to be sure that there is ANY DHEA in it, let alone 25 mg. There's no oversight authority. So the BUMC does tests. They buy various brands, and test for the presence of the hormones in the amounts they claim.
That helps some women. If the problem is that their bodies can't turn cholesterol into DHEA, but they can turn DHEA into other stuff, then that's all they really need.
But if the problem is farther down the line, adding DHEA isn't enough. You have to directly add testosterone, too.
Topical testosterone is manufactured. It's for men who don't produce enough testosterone. It's in a gel form. And the amount of testosterone each dose has is appropriate for a man for a day.
It's ten times what a woman needs. A woman needs to divide this gel up into ten little bits and use it over ten days.
And the FDA hasn't approved ANY topical testosterone for women. So pharmacists have refused to fill ther perscriptions. . .
I'm still furious at Congressman Jeff Flake.
Which is fascinating stuff. The ISM has two parts, a basic research department, which is doing clinical research, animal trials, and so forth, and a treatment clinic. These two sections are closely tied together, and each benefits from the experiences of the other.
The lecture consisted of four parts -- one of the psychiatrists did a presentation on the psychological factors, a patient spoke about her experiences, Dr. Goldstein did a lecture on some of the most recent findings they'd uncovered, and then questions-and-answers.
The psychological part was nothing new. I mean, in all honesty, there's been no real progress in the psychological treatment of sexual dysfunction in years. Obviously, it's important, and there are a couple things they're doing a little better than they used to -- an improved Sexual Distress Scale questionaire, stuff like that. But nothing really exciting.
But the physiological side. . . that's just amazing what they're doing. It's a completely new field. They're discovering things about how hormones work, what they are, what they do, what affects what . . . stuff that's never been studied before.
As people who know Lis and me know, we've been in treatment for Lis's sexual dysfunction for years. We started out with psychological treatment, and, after years of this, discovered that Lis has no emotional or psychological traumas, has a perfectly fine body image, no sexual hangups, and no sex drive.
The entire field of actually studying what can go wrong PHYSICALLY with women's sexual responses only started five years ago.
Almost everything can be traced back to hormone levels. But it's amazing just how many things those hormone levels impact, and in how many ways.
Okay, obviously, low testosterone leads to low desire. Fine. We knew that. But it goes on from there. . .
Screwed-up hormone levels lead to the inside lining of the vagina all but going away. That's the part that lubricates. So, if you don't have the right hormones, you lack most of the part of the body that causes lubrication. And the amount of lubrication it secretes has a higher water percentage and lower mucus percentage than if the hormone levels are working -- so it's a lousy lubricant anyway.
The hymenal opening has vestigial musk glands around it -- they also produce some lubrication, but basically, once upon a time, they were musk glands. With proper hormones, they produce mucus and clean themselves out. With low androgens, they don't produce mucus, and become a haven for bacteria, which settle in and cause infections. Imagine how painful intercourse would be if you had swolen infected glands surrounding your vaginal area. . . Lis doesn't have to imagine this. . .
Those were things we'd heard about previously (the actual animal studies on rats on the inside of the vaginal lining were new, but that was suspected last time we'd heard this). And they'd discovered the vaginal glands the last time we saw them.
But they found out a number of new things about neuron activity and androgens.
The nerves in the genital area require testosterone to function.
So, if you have no, or very low, testosterone, you have less feeling in your genitals.
Basically, Lis might have as much feeling in her clitoris as most people have in their forehead.
You know how difficult it is to give someone an orgasm by licking their forehead?
No wonder she's never had an orgasm.
It's not my fault.
Anyway -- why does this happen? Well, that's not known yet. But they're starting to come up with hypotheses. . .
(Just a quick reminder of how steroidal hormones work -- the body takes cholesterol, then whaps it around a bit, and it turns into DHEA, and then the body takes the DHEA and whaps it around and turns it into testosterone. It goes through other pathways, too, turns into various things in between, and estrogens are made and stuff like that. I'd need a chart to follow exactly what turns into what how, but that's the basic idea. Stuff turns from cholesterol into other stuff, and that other stuff turns into Stuff You Need.)
Apparently, testosterone is produced in like two different places in a woman's body -- I don't remember exactly where, and I wasn't taking notes, but I think they were like the adrenal gland and the pituitary gland. Birth control pills completely shut of testosterone production from one of these. Not only that, but they also produce a secondary something-or-other which bonds to free testosterone and neutralizes it.
So -- they cut off like half your production of testosterone, and neutralize a good chunk of the rest of it.
If you manage to make so much testosterone that, even after losing over half of it, you still have enough testosterone to maintain neural pathways to your genitals, and maintain the vaginal wall thickness, and maintain the health of those glands, and all those other things, then you're fine. But if you don't, you're fucked. Or, more to the point, you're NOT fucked.
Oh, and once that gland has been told not to produce testosterone for long enough, it won't. Even if you go off of birth control pills. That function of it is just plain dead. It's been destroyed.
Again, if you manage to produce enough testosterone anyway, this isn't really that bad. But, if you don't, Everything Dies. Desire, ability, lubrication, the triggering chemicals in the brain that tell you to have an orgasm, the sensation in the genitals, the bits of the hymenal glands that keep it from becoming painfully infected -- it ALL GOES AWAY.
Now, it seems that there are other things out there that can cause a lack of testosterone in women, besides birth control pills. But I can't help but wonder if the sharp increase in the reported incidence of sexual dysfunction in women comes, at least partially, from the point when birth control pills became so prevalent that women could be given them very shortly after the onset of menses. Lis was on birth control pills by her third period or so -- her body CAN'T have finished figuring out how to manufacure all the hormones it would need as an adult by that point. And now it never will.
Obviously, you'd need to do a large-scale study to find out if there is any correlation between the age at which women went on the Pill and sexual dysfunction. But it seems like it would be a reasonable hypothesis.
So, anyway -- what can you do about it? You can take DHEA suppliments. Those are not only over-the-counter, they're not even counted as DRUGS by the FDA. Which is bad. Because if a bottle says "25 mg of DHEA", there's no way to be sure that there is ANY DHEA in it, let alone 25 mg. There's no oversight authority. So the BUMC does tests. They buy various brands, and test for the presence of the hormones in the amounts they claim.
That helps some women. If the problem is that their bodies can't turn cholesterol into DHEA, but they can turn DHEA into other stuff, then that's all they really need.
But if the problem is farther down the line, adding DHEA isn't enough. You have to directly add testosterone, too.
Topical testosterone is manufactured. It's for men who don't produce enough testosterone. It's in a gel form. And the amount of testosterone each dose has is appropriate for a man for a day.
It's ten times what a woman needs. A woman needs to divide this gel up into ten little bits and use it over ten days.
And the FDA hasn't approved ANY topical testosterone for women. So pharmacists have refused to fill ther perscriptions. . .
I'm still furious at Congressman Jeff Flake.
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I hope something comes up for you two. How astoundingly frustrating.
I wish I could vote against the Flake.
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Call this number: 1-800-839-5276
Ask for Congressman Jeff Flake of Arizona's office. You'll get a staffer. Say that you want to register your displeasure at his offensive remarks attacking women's sexual health. Or, y'know, however you want to phrase it. Ask for a call back, if you want.
prescriptions
I don't know if pharmacists are allowed to refuse to fill those prescriptions. It would make sense for them to verify those prescriptions with the doctor, but refuse? Not sure what their code of ethics etc requires.
I would imagine given the oversight on prescription co-pays these days you'd have a hard time getting reimbursement for it, at least it would fall under experimental treatment or something. But that's a secondary if not tertiary issue.
Thank you for posting this. I don't know if it's a difficult subject for you to post about, but it is fascinating information and research to have available.
Re: prescriptions
Pharmacists do have a duty to alert people if they think the doctor's made a mistake. Since the topical testosterone is not indicated for women -- and since it can be abused by athletes and body builders -- I can see why this would happen. But, yeah.
Is it a difficult subject to post about? Eh. We've been posting about it for years now. It's an upsetting situation, but talking about it isn't that upsetting. Seven years and counting!
But this may finally be the year.
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A.
who could write a page of comments but the time isn't there....
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When I went off the pill, there was a form to fill in about why I was going off it, with such boxes to tick as "wish to become pregnant" "side effects x,y,z" and one of the boxes was "lack of interest in sex". I ticked that, but I've wondered from time to time since if it meant "lack of interest in sex because I was on this medication" or alternatively "lack of interest in sex because my partner left me..."
I wonder if it might be possible for the doctors to look at whether it would be possible to take the hormones from healthy women rather than topical testosterone 10x for men. I guess it would be embarrassing to ask blood donors how well they naturally lubricate, but if you explained it was to help dysfunctional women I'd think anyone would be glad to.
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I was wondering if it could wake those musk glands up again.
There have to be enough lesbian and bi non-lubricating women out there to do a statistically valid study on this.
I think there are a ton of things about hormones and women's bodies which haven't been sufficiently studied -- like how come women who live together will slowly synchronize their periods? There's got to be some hormone-level communication going on there.
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Same problem wrt getting the patches prescribed for women, though, I suspect.
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I'm horrified that that is a side effect of the birth control pill. Why isn't this making more news?
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Go look up Congressman Jeff Flake's comments on it if you want to become furious.
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Notice the common use of the phrase "impotence and infertility" as if they were parallel and gender-specific problems. Equating men's lack of pleasure with women's inability to reproduce implies that female sexuality is primarily for procreation, and women's pleasure is secondary.
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Testosterone is not the only missing hormone that can cause any of the listed problems, just the major obvious one. The news that its prolonged absence can lead to an inability of those functions to ever return, however, was news to me. As I will soon be seeking out treatment for my own problems, I sincerely hope that 10 years of normalcy preceeding the 7 years of abnormalcy will allow those functions to return. Thanks for the information, -H...
Boggled!!
I hope a solution is soon found for you both, and all that suffer so.
Irwin, Jen & Laura
History of 'sexual dysfunction' (hysteria) includes the steam powered vibrators of the Victorian era. Phrenology, corsets, violet wands and steam powered vibrators. Ah, what an legacy.
Re: Irwin, Jen & Laura
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I have wayyyy too many hormones, male and female, and it makes me (quite literally) nuts. Thanks for sharing your perspective.
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Um....does this count for everyone???
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The "desire goes away and never comes back" scenario is by far the least common. But it's what happened to Lis.
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H
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Thanks
H
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http://www.osmond-riba.org/lis/journal/2005_11_13_j_archive.htm includes a link to about a dozen blog entries Lis wrote about various FSD-related issues.
Hi
(Anonymous) 2007-12-22 12:08 am (UTC)(link)Re: Hi
http://www.ribarambles.org/fsd.htm
I wish we had more hopeful news -- in the past several years, we haven't really made ANY progress. It's mainly "getting fed up and quitting and not even trying" sorts of stuff.
On the plus side, we ARE happily married, with the only really MAJOR problem being the sex stuff.
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