Thursday, March 26, 2015

To Be HSDD? Or, Not To Be HSDD? That is a good question!

Over the past few years, since my diagnosis of HSDD and my time on the clinical trial, I routinely am asked by friends, family and others "how do you know you have HSDD and not just a relationship/stress issue?"

That is a fair and valid question and one which has a clear and simple message.

First, however, let me acknowledge that YES, as a woman, my desire has waxed and waned over the years.  

  • Having 4 children under the age of 8 will exhaust you and drain any libido right out of you.


  • Breastfeeding literally sucks the libido right out of you-when you are up every few hours, who is awake enough for sex?


  • A hectic or stressful job will void you of any desire to have sex.


  • Certain medical conditions and/or prescription drug therapy plays a major negative role, at times, on our libido and desire for sex.


  • Finally, there is no doubt that when your relationship is not healthy-physically or emotionally-you have no desire to have sex.


HSDD is lack of desire for sex IN THE ABSENCE OF any other contributing factors as listed above.  It is persistent and lingering, accompanied with distress for which there is currently no medical treatment.

So how is one diagnosed with HSDD?

Another fair and valid question.  I can tell you from personal experience that there is a very thorough medical and emotional evaluation before you are slapped with the label of HSDD and with good reason.

Clearly there are times when medicine is not appropriate but a "partner-ectomy" is what the doctor ordered.

Other times a long beach vacation is the right prescription.

However, if you answer similar questions as I've listed below and assign a value to them ( either insignificant, infrequent, often, always, low, medium, high..depending upon the question ), your honest answers will either classify you as one with HSDD or not. 

If you do not "qualify" for an HSDD diagnosis, often psychotherapy is prescribed, other medical treatments for specific physical ailments or a call for further evaluation might be determined.

In the end, these questions demand very honest and mindful answers...getting a diagnosis and attempting to treat it with an approved prescription will NOT work if it is not truly HSDD.

Here's a quick example:  If you have no desire to have sex with your incredibly sexy and devoted husband but begin to foam at the mouth when Bradley Cooper enters the room, you likely do NOT have HSDD. You likely have a relationship issue.

If however, you are like me and find your husband AND Bradley Cooper extremely handsome and sexy but still do not have the desire to jump EITHER of their bones, you likely have HSDD.

But this diagnosis should be made carefully with a medical doctor.

For more information, visit eventhescore.org.

Here are sample questions divided into three categories: sexual interest, interest when you think about sex and general relationship questions.


The following questions are used to assess your feelings of sexual interest or desire as well as some other aspects of your sex life. By sexual desire, it means your interest in having a sexual experience whether alone or with a partner. Sexual interest involves thoughts, feelings, and/or a willingness to become involved in some sort of sexual activity.



There are no right or wrong answers to the questions. 


SEXUAL RELATIONSHIP


How satisfied are you with the sexual aspect of your relationship with your partner?

SEXUAL ACTIVITY ~ NON-SCORED  ITEM

Over the past month, approximately how many times did you engage in sexual activity either alone or with your partner?
Sexual activity includes sexual caressing, genital stimulation (including masturbation) or intercourse.

SEXUAL EXPERIENCES


RECEPTIVITY
 Over the past month, when your partner approached you for sex, 
how often did you accept? When you accepted, what was your 
level of enthusiasm?
INITIATION

Over the past month, how frequently did you do anything to encourage sex with your partner?

DESIRE - FREQUENCY
Over the past month, how frequently have you wanted to engage in some kind of sexual activity, either with or without a partner?
How strong was your desire to engage in sex?
AFFECTION
Over the past month, how often have you wanted physical affection other than sex, for example touching, holding, kissing? How intense would you say was your desire for physical affection?
DESIRE - SATISFACTION

Over the past month, how satisfied were you with your overall level of sexual desire/interest?

DESIRE - DISTRESS

Over the past month, when you thought about sex or were approached for sex, how distressed (worried, concerned, guilty) were you about your level of desire?
THOUGHTS - POSITIVE
How often have you thought about sex over the past month?
When you thought about sex, what was your level of interest/strength of desire in having sex?
EROTICA

 Over the past month, how did you react to sexually suggestive material (e.g. love scenes in movies and on television,  erotic  pictures/stories  in magazines/books)?

AROUSAL - FREQUENCY

Over the past month, when you had sex, how often did you become aroused (sexually excited, wet, lubricated, etc.)?

AROUSAL EASE

Over the past month, when you had sex, how easily did you become aroused (sexually excited, wet, lubricated, etc.) in response to sexual stimulation?

AROUSAL CONTINUATION

Over the past month, once you started to become sexually aroused, did you want to receive more stimulation? If yes, how strong was your desire to be further/more sexually stimulated?

ORGASM
Over the past month, when you had sex, how often did you have an orgasm? How easy was it for you to have an orgasm?

GENERAL RELATIONSHIP

How satisfied are you with your relationship as a whole?

THOUGHTS - NEGATIVE

Over the past month, including this interview, when you think about having sex, do you feel any of the following negative feelings: turned off, anxious, repulsed, sick?

PAIN

Over the past month, did you experience genital pain during sex?

MOOD
Over the past month, how has your mood been? Have you experienced any feelings of: sadness, hopelessness, helplessness, worthlessness? How often have you had such    feelings?
FATIGUE
Over the past month, did you experience fatigue, tiredness, or loss of energy? How often did you experience fatigue, tiredness, or loss of energy?


Tuesday, March 24, 2015

Risky Business

Often drugs presented before the FDA are rejected due to the "risks" associated with the drug or the "risks" not outweighing the "benefits".

A few years ago I was on the clinical trial for Flibanserin, which I found not only to be extremely effective at improving my medically diagnosed HSDD but also very well tolerated.  Sadly, the FDA thought differently and has sighted "risks" outweigh any "modest benefit".  

Well, why don't they ask my husband!  He will tell you that "modest" is in the eye of the beholder and what we experienced was far greater than modest!  But even if it was "modest" to some, I would dare say any couple who went from monthly sex to bi-monthly sex would not consider that "modest".  As a matter of fact, that is a 100% increase in frequency.

As we have continued in our journey and read with interest and shock some of the grossly inaccurate opinion pieces with regards to flibanserin, I have often wondered why all the critics seem to be those who NEVER TOOK THE DRUG and often do NOT have a clinical diagnosis of HSDD!

Would it not make more sense to listen to women who ACTUALLY took the drug???

As I watch tv at night and talk with friends, the subject often ends up on drugs and side effects because this is clearly high on my interest level.  And as we discuss common, every day medications that we all take, I began to research what side effect baggage they bring to the table.  Interestingly, the same "benign" side effects of flibanserin but more frightening, several have far more serious and often irreversible side effects.

I have listed a few of these very commonly prescribed products and links to their Package Inserts that accompany each prescription.

Headache and nausea top the list on just about each of these - and just about every drug out there I believe.

What is disturbing is that some of these carry risks that in no way, outweigh, the benefits!  At least not in my mind!

I have listed a few other side effects that I find difficult - if not impossible- to believe any woman would consider "worth the risk" when having to use an off label product for HSDD because there IS NO FDA APPROVED treatment for us!  Many of these drugs are indicated FOR MEN, not women.  Others are used OFF LABEL and we are used as guinea pigs to find an acceptable dose.

Penile Rupture??  Irreversible hair growth? Worsening acne? Fluid retention?  Anxiety? Epigastric distress in 83% of patients???

Let me ask you!?  If you are a woman experiencing HSDD and approaching mid life, do you need any more fluid retention?  Are you not anxious enough?  Belly not give you enough issues as it is?  A couple of chin hairs maybe, but are you willing to grow a goatee in exchange for possible benefits of testosterone?

For me the answer is NO!

WOMEN DESERVE an FDA approved treatment for HSDD to help EVEN THE SCORE!!

Well, that may be a stretch.  26-1 will hardly be evening the score.  But it will be a step in the right direction!!



Effexor
http://labeling.pfizer.com/ShowLabeling.aspx?id=100

Viagra
ttp://labeling.pfizer.com/ShowLabeling.aspx?id=652

Androgel ( off  label for women )
http://www.rxabbvie.com/pdf/androgel_PI.pdf

Xiaflex
https://www.xiaflex.com/_assets/pdf/XIAFLEX-PI-and-MedGuide-Combined-20131206-ver-e.pdf

Testosterone ( off label for women )
http://www.drugs.com/pro/testosterone-cypionate.html

Aspirin
http://www.drugs.com/pro/testosterone-cypionate.html

Sex can make us or break us



Our culture has an interestingly bizarre, confusion laden relationship with sex. 
While teens are expected to “just say no” the average adult struggles to come 
to a resolution and find a consistent understanding of what sex is and how it figures 
and fits into life.
The constant confusion experienced by our caregivers regarding sex is an heirloom, 
passed on from generation to generation.Teenage parents become parents of 
teenagers who want to protect their kids from “making the same mistakes” 
using control of sex education as a tool to prevent it from happening. Such good 
intentions are confusing to teens (it was okay for you to do it but not me?) and 
create a lot of disruptions within their identity. The ambivalence we feel toward sex 
brings with it a range of emotions including shame and guilt, which in turn prompt 
us to close ourselves in and ultimately attempt to repress our sexuality. When this 
happens, and without realizing, other parts of our lives will become impacted as 
well: creativity gets blocked, relationships become tense, boring, or traumatic, 
and a general sense of anxiety ensues.

When sex is shameful, and even today lots agree that it should be, we become 
afraid of it, try to avoid it, or engage while remaining emotionally disconnected 
from it.
And while most people have a theoretical understanding of the fact that sex is a 
biological part of what makes us human, a necessity, or a chance to release pent 
up energy, few agree that these same theories apply to them. It’s interesting how 
when I talk to my clients about sex, a large portion of them become visibly 
uncomfortable or start giggling.

Certainly there are times when negative feelings and attitudes toward sex are 
born out of traumatic experiences, such as sexual abuse. In this situation, the issue 
of sex is much more complicated than slightly readjusting one’s perspective. Without 
a history of sexual trauma though, the average adult is able, at times with help, to 
reason with their sexual self and start taking advantage of the benefits sex has 
(helps the immune system, boosts libido, lowers blood pressure, lowers the risks 
of heart attacks, works as a workout, lessens pain, improve sleep, and 
decreasing stress).

How to start understanding your relationship with sex.
Lots of people carry their confusion and ambivalence toward sex throughout life 
and find themselves going round in circles, unable to find a solution to their problems. 
That is why it is a good idea to look at your sex life and figure out how or if there 
is a link to whatever you are dealing with. Before making any connections, it is 
important to explore and understand your relationship with sex.

Ask yourself a few questions:
1. What is the first thing that comes to mind when you think of sex?
2. What is your first emotional reaction to the idea of sex? Are you 
comfortable/uncomfortable with it? Embarrassed? Ashamed? At ease? Your main 
reaction is a good indicator and predictor of your general attitude toward sex. 
Knowing how you really feel about it will determine where you need to focus and 
what you might have to work on.
3. What was your caregivers’ attitude toward sex? Where they open about it, 
uncomfortable, or avoidant of the topic? If you are honest in your answers you 
might be surprised to notice that there are some commonalities between your 
answers to questions 2 and 3, and that is perfectly natural.
4. Can you think of any benefits you have experienced as a result of having sex? 
In answering this question avoid searching your memory for generic truths or facts; 
rather use only your personal experience. Answering this question will further clarify 
your attitude about sex and how it fits in your life.
5. Similar to the above but able to yield a different response, you might ask yourself: 
What do I get out of it? Is it merely a need that requires fulfillment or is it more? Be 
as specific as possible.
Start with these questions and see where they take you and what other questions 
might pop up. Try to determine if there are things that might require more attention 
or maybe resolve, in order to improve the other areas of your life that might be 
affected by your relationship with sex.

Monday, March 23, 2015

Little BLUE pill turns 17...little PINK pill STILL waiting to be born

Check out this news piece from 2013 when Viagra turned 15. Two years later and still NOTHING for women! It's time to EVEN THE SCORE!

Honestly, 26-0 is UNACCEPTABLE. Sex in the City is nice but without a little pink pill some of us don't have Sex in the Bedroom!!

#WOMENDESERVE

http://www.cnn.com/videos/health/2013/03/27/lead-pkg-cohen-viagra-anniversary.cnn

Saturday, March 21, 2015

#WOMENDESERVE

Women Deserve to Have Low Libido Treated!


Dr. Michael Krychman
Michael L. Krychman, MDCM, is the Executive Director of the Southern California 
Center for Sexual Health and Survivorship Medicine located in Newport Beach California.  

FEMALE SEXUAL EMPOWERMENT
I have focused my practice on female sexual issues, treatments, options and empowerment. 

Regardless of one’s background, I imagine most would agree that therehas been a noticeable 
societal shift towards greater acceptance, awareness and expression of female sexual empowerment. 

Everywhere you turn, women are owning their sexuality and speaking out - sometimes in a 
way that may be considered risqué, but at least they are talking!

Do not get me wrong, many women I see in my practice would rather keep their sex lives 
behind closed doors for a variety of reasons. And some women do not have much in the way 
of sexual interest based on religious or cultural beliefs or, in some cases, due to psychological 
issues, problems in their relationship or their own personal make-up and/or life circumstance.

But what about those women who feel left out of the sexual realm, not because of their 
own set of personal beliefs or treatable psychological issues, but rather an actual biologically 
driven lack of sexual desire that is out of their control?

The rate of low sexual desire or “low libido” is high, reaching 43 percent. 
While an estimated 10 percent of women experience low sexual desire with the hallmark 
characteristic of distress, a medical condition termed “hypoactive sexual desire disorder” 
or HSDD. It is personal distress that we are medically concerned about as well as any 
disorders that cause pain. The North American Menopause Society has a list of online 
resources and information for women.

Continue reading here:



Friday, March 20, 2015

Get out of the Dark!

CBS Boston validates women with HSDD and need for FDA approved options for treatment!

http://boston.cbslocal.com/2015/03/11/pink-pill-rejected-by-fda-despite-promising-results/

News You Can Use to EVEN THE SCORE

Log on to eventhescore.org and sign the petition to make female sexual dysfunction #1 at the top of this list!

Did you know that the has listed female sexual dysfunction as 1 of its top 20 unmet medical needs?