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All Your Questions About HSDD, Answered By A Doctor

This post highlights the #RightToDesire Campaign, which is sponsored by Sprout Pharmaceuticals.

Over the past few months, I’ve been working with the Right to Desire campaign to help get the word out about HSDD — and we’ve had some really good discussions about it. For today’s post, I collected your questions about HSDD, and added them to my own questions about HSDD, and then interviewed Dr. Somi Javaid — one of the nation’s leading experts on women’s sexual health.

It was such a great interview! I can’t wait for you to read it. I want to hear your thoughts on her answers, and I want to hear if you’ve got additional questions.

Hi Dr. Javaid! I’ve seen your videos on the #RightToDesire website, and I’d love to hear how you got involved with campaigning about HSDD.

I’d love to share that with you. Initially, I ended up in Women’s Healthcare because I almost lost my mother when she was 45 years old due to a misdiagnosis. So in my career, I’ve made it a priority to be dedicated to listening to women, and empowering them, and allowing them to have equal access to care.

I was a practicing OBGYN, but at a certain point, I stepped away from doing obstetrics (it was for “mom” reasons — I have three kids and there was a question if one of them was autistic), and I honed in on gynecology only, and realized that I was super passionate about women’s healthcare.

I found I was getting more and more patients talking to me about libido, and sexual pain, and orgasm function. And I realized there was really nothing fantastic out there (organizations or clinics) focused on women’s sexual healthcare.

I ended up building a very large women’s sexual health practice here in Cincinnati (on a wing and a prayer!). My practice in Cincinnati offers bread-and-butter gynecology (like pap smears and annual exams), but we really focus in on sexual dysfunction, and menopause health, and treating the entire patient.

You’ve got to remember where I am — I’m not on the coasts — there weren’t any women’s sexual health practices available in this area, or in the greater area around Cincinnati. Nothing in Kentucky. Nothing in Indiana. So all of these women start coming in from all over the tri-state area to see me. People told me it would never work (a women’s sexual health practice?? In Cincinnati??), but we’re over 6,000 patients strong in less than four years.

The clinic in Cincinnati has been so successful, that I’ve decided to take the idea national, and this week I’m beginning the launch of HerMD, so that women can have this type of healthcare, everywhere. Doctors and hospitals can open HerMD sites across the country.

How often do women experiencing HSDD show up in your office? Once a week? Once a month? How common is it?

For me it’s daily. When I was in a traditional OBGYN practice, it was monthly. But for me, it’s daily. There are days when I will start 7 to 10 women on some type of treatment for low libido. And that’s not atypical in this office, because we specialize in sexual health, and other gynecologists do refer to us, so that’s why our numbers are higher.

Is every woman that has low or no sexual desire experiencing HSDD?

No. The definition of HSDD is making sure that it’s not attributable to a lifestyle change (like a divorce, or your pet recently dying), and not attributable to a medical problem, (like a recent depression diagnosis, or cancer).

So it can’t be a recent life change, it can’t be attributable to a new medicine side effect, and it has to actually be bothersome to the woman. So patients who don’t ever have sex, but don’t care, are not experiencing HSDD. It has to be bothersome.

Something happening in your life that’s going to make you not want to have sex? That’s not HSDD. HSDD has to be exclusive of all those things.

Have you ever suspected HSDD, but then after further questions, discovered it’s not HSDD? Or said in another way, are there other things besides HSDD that cause low sexual desire?

Yes, absolutely. And the most common thing is that the problem is actually within the relationship. So a woman will say, “Oh yeah, my libido is great! I’m divorced now. My lack of desire was all within the confines of that relationship.” That’s why as a doctor I have to take such a careful medical history.

Also, I’m not the end-all-be-all, and I’m not a therapist. So I work closely with a sexual health counselor. Any doctor who thinks they can do this kind of work completely on their own is not thinking about the complete care and treatment of the patient. Therapy goes hand-in-hand with seeing a physician who deals with this speciality.

An example: I had a woman referred to me by another doctor, and I was told by the referring doctor that the issue was low sex drive. So I asked, “Why is your sex drive low?” And she said, “Well, sex hurts.” And I said, “Well, has it always hurt?” And she said, “No, no, no. It’s a recent thing. Before the pain, my libido was great.”

And that makes sense, it’s called The Pain Cycle. If our body or brain detects pain with intercourse, our desire is going to down. So I did an exam, and found a mass (it was luckily benign). That was a patient sent to me for “low libido” but no, really there was pain from the mass that was driving her libido down. So that was not an HSDD situation.

What’s the difference between being asexual and experiencing HSDD?

There is a difference. Being asexual typically means that a patient has zero desire, and desire typically hasn’t been there ever. And (this is important), the patient is not bothered by it.

For an HSDD patient, the low libido is bothersome to the patient, and she at some point did not struggle with this, so the low libido is a deviation from her norm. And her symptoms have persisted for more than six months.

Does HSDD seem to occur at specific ages and stages? Or does it affect a wide range of women?

It affects a wide range of women, but I definitely see some peaks as women are heading into menopause. And that’s because, as we go into menopause, not only do our estrogen levels drop, but also our testosterone levels. And testosterone is a key component (but not the only component, like some people think) for sexual health and desire.

Do you feel like most doctors know what HSDD is? If a woman is experiencing HSDD, but doesn’t know it exists, and goes to the doctor to get help for her symptoms, what are the chances the doctor will recognize and diagnose HSDD?

A lot of doctors do know what it is. The problem is in the lack of training in this country. The statistic currently is that less than 30% of OBGYNs nationally are trained in sexual health.So they may know what HSDD is, but they may not necessarily know how to treat it, or they may not want to treat it. And the reason “the want” is not there, is because you’ve got to remember the typical doctor is getting to see patients 10-15 minutes at a time due to insurance constraints.

And sexual health is something that is time consuming — it involves building a relationship of trust that goes both ways. You have to get into a lot of detail with patients and you have to explain things. Often, women come in and they’re upset. They’ve been struggling with this for a long time. And you’re doing the patient a disservice if you’re trying to treat the problem in a 5-10 minute visit. So the system is broken and not set up to allow sexual health visits. Unless you have the time to develop that relationship, you’re not going to have a successful visit. It will be dissatisfying for patients and also for the provider.

If you were delivering a lecture to doctors about HSDD, what’s the most important message you would deliver?

Ask her one more question. Ask her about her libido; ask her about her sex drive. Because sexual health is a key component to overall wellness, overall well-being, and quality of life.

Doctor’s will argue with me and say, “Well it’s not going to kill her. She’s not going to die from it.” But there are many things we treat people for that don’t kill — they’re not going to die from their migraines, or their period cramps — but we treat patients because we have the science.

I would argue that some couples may divorce because of HSDD; women get depressed because of it; women are isolated because of it — I have women who won’t date because they feel broken. So for me, it’s a huge red flag to not address it.

And for the busy physicians who I train who say, “Hey, I don’t have time to treat this; I’m seeing 50 patients in one day.” Then I’ll say, “Hey. I get it. I was in your shoes. You can refer. Or if the patient says there’s a problem, then check the labs and schedule a follow up, and get them back in the door. Even if it takes two visits instead of one, at least you’re addressing it.

So take the time to ask her one more question.

Is HSDD something a woman can completely recover from? Or is it a chronic issue that has to be managed long term?

This is a tricky question. I would say there’s no cure because it can always pop up again. But I do have patients who have been through treatment, and they’re good. They’re good! But sometimes life happens and they’re triggered again. So I’d say, not necessarily a cure, but women can live the rest of their lives symptom free.

Any particular patient success stories you can share?

I’ve had patients who have come to me and they have not been sexually active in years. A particular couple comes to mind, they had not been active in more than 5 years. She didn’t have any medical problems leading to it; she wasn’t even menopausal. We treated her, and we got them into therapy as well, because obviously there were emotions involved with not being intimate.

They’re now successfully having sex. It’s amazing! They are no longer on the brink of divorce.

But there’s a ton to be done. Research, advocacy, and education — which is near and dear to my heart. Getting the word out brings it to the forefront of conversation, it educates the patients, and it also empowers them to go to their physicians and demand to be heard. And if their doctors don’t want to deal with it, then they should find someone who will.

We hear news stories about over-prescribing antibiotics, pain killers, and depression meds. If a doctor prescribes something for HSDD, how can women be sure they really need it?

That’s where the trust comes in between patient and physician, and that’s where you have to make sure it’s not just a temporary dip in libido. If you break your foot and you’ve been on crutches and you don’t feel like being amorous, that’s not HSDD, and you don’t need treatment.

You have to make sure you meet the criteria for HSDD. And there’s a really quick little test, the DSDS – Decreased Sexual Desire Screener. It’s four questions that you can google. And if you take the screener, and think, this is me, then yes, you need to be treated.

But the most important thing about HSDD, is that it has to be bothersome to the patient. So if patients tell me, “I’m not having sex, and I’m fine.” Then great, I’m not going to prescribe anything. It needs to be patient driven.

Many (or most?) women want to have a happy, healthy sex life, and a “normal” amount of sexual desire. But what does “normal” even mean?

I hate “normal”. I will sometimes use typical or atypical. I have couples who have sex every day and if it deviates from that it’s upsetting to them. And I have couples who have sex every two months. So I think my definition of normal is that both partners feel fulfilled and there’s no isolation or shame.

For women, desire will change throughout our lifetimes. You have to go by your norm, not something you read in a magazine, but what feels good to you.

The female sex drive seems so mysterious and complicated. If she doesn’t feel like having sex, is she just exhausted? Is it the sort of thing where society puts a premium value on beauty, and she doesn’t feel beautiful, so assumes no one will desire her, and therefore loses her own desire? Or maybe she’s about to start her period and her hormones seem off? Has she just lost her attraction for her partner, and would get her sex drive back with a different partner?

Is blaming sex drive on those types things a myth?

It’s not a myth, it’s true that it’s actually very complicated. And when I give a lecture about female desire I throw up a slide with a cockpit and all the little knobs and switches, because there are so many things involved.

For men, it’s simpler; basically an on-off switch.

For women, that’s where having a therapist and a physician comes in. That’s where you have to tease out: Is it the relationship? Is it self-esteem? Is it physical pain? Is it side effects from another medication? A complete and thorough history and physical is so important.

And it sounds like a lot of work. Patients are like oh my word, that’s too much work. But once you find out what’s going on, it’s not going to be.

Culturally, we’re told most women have a low sexual desire — and that that’s normal. The big joke is that men are always having to talk their wives or girlfriends into sex. We’re also taught that there’s something wrong with women who have strong sexual desire.Since we’ve all grown up in a patriarchal world, how do we even figure out if there even is an “ideal” amount of sexual desire that women feel?

First, I would say I believe women like sex more than what we as a country think is culturally acceptable or palatable.

Second, I would say when I look at age compared norms between women and men, I think men do think about sex more. And I think that’s testosterone. Their levels can be 10 times or higher than women’s. So there is definitely biochemistry at play.

I think a lot of women don’t feel empowered enough to talk about the fact that they love sex. Or I have some women who are patients who feel guilty. They’re like OMG, all my girlfriends are having problems — I feel guilty saying that we have a great sex life and that I actually still enjoy sex.

So I think it’s a different story when you actually talk to women about it and they feel comfortable enough to really share their experiences.

Do doctors have a baseline for what they consider typical or normal for women and sex?

I don’t know if we’ll ever get there. Women’s sexual health and sexual drive is complicated. I mean, in this interview, we’ve only been talking about libido — we haven’t even tried to talk about arousal or pain disorder or orgasm. It’s so multi-faceted that I don’t think we’ll ever get to typical. And when you add cultural factors, age factors, other health factors to that… And then, there are also partner limitations. I have patients who have partners with problems like ED, or who are chronically ill, or have back problems.

And I don’t think we need to get to typical. Do we really need to say what’s typical and then have people judge themselves against that?

When women come and talk to me about their sexual desire, I ask “Were you ever at a point where you were happy with your sex life? That’s where we’re going to try to get you to. Not what the magazine tells you. Not what your girlfriend next door is doing.”

For men, I think it’s more simplistic. With men, their treatments are approved more rapidly, and they have more research dollars than women do. So there’s a lot more research and a lot more data out there. I think that’s why you have better guidelines for men’s sexual health.

I sometimes feel like I’m living in Gilead from The Handmaid’s Tale when it comes to women’s sexual health. And I feel like in 2019, in the United States, it shouldn’t be that way. But there are definitely many biases politically, and culturally, that we’re fighting against.

Do you see yourself as part of rising trend? Are we starting to pay more attention to women’s healthcare? Are we going to see significant differences in the next 10 or 20 years? Or is this a long game? Is it going to take us 200 years to catch up?

Oh no. The tide is changing. I mean, you can feel the shift in the atmosphere. It’s definitely changing. I’m seeing it with providers, with more and more physicians wanting to go out to ISSWSH (International Society for the Study of Women’s Sexual Health — it’s a coalition of doctors who are dedicated to women’s sexual health; they do provider training a couple times a year). I’m getting approached for more and more research and clinical trials, and there are more and more people who are willing to fund research and stand behind women.

I see more bold patients for sure, who are coming forward, who are saying I want to talk to you about my orgasm, I want to talk to you about my sexual pain. So we’re seeing a movement of women coming forward with their sexual health concerns. My patients are well read and they are empowered. So I think if they are given an audience, someone to listen to them, they’re willing to share.

There have been many studies done showing that the percentage of women who want to come forward with sexual health complaints is rapidly increasing. So now, doctors need to catch up and get the training, so they can treat these women.

I see more research, more medical centers dedicated to women. I think the tide is finally, finally changing — and we’re going to start narrowing this gender gap.

Thank you, Dr. Javaid! This information is all incredibly helpful. I’m so glad I got to speak with you.

Your turn. What are your thoughts? Did you learn anything new in this interview? Did it bring up more questions for you? I’d love to hear. And if you think you may be suffering from HSDD, I want to remind you that there is help — reach out to your own healthcare provider to discuss your options.

P.S. — Want to follow Dr. Javaid and HerMD for all the latest on women’s sexual health? She’s on Twitter, Instagram, and Facebook. And HerMD is also on Twitter, Instagram, and Facebook.

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