Driving Desire

Driving Desire

I believe in word pictures to explain a situation that others might not understand – particularly if they have never experienced or suffered from a given situation or condition.

For Hypoactive Sexual Desire Disorder in women, it is my belief that far more women suffer from this than either are willing to talk or that even recognize that there is a “ medically identified condition” for the distress and dysfunction they are experiencing.

I have been told numerous times since I have been talking about my experiences before, during and after my time on the flibanserin clinical trial, by men, that they suspect their former spouse/partner or someone they know may be or had been suffering from HSDD but both parties were unaware of the condition and thus, relationships were pushed to the brink and even ended – mostly because there was a lack of understanding about HSDD  but more importantly, because there was not an FDA approved treatment for the woman half of these couples, such as Viagra, Cialis and testosterone is available for men.

Picture you dream car.  Brand new, shiny and all polished.  Just the thought of it gets your adrenaline flowing and your heart pumping. Tenderly you care for it as if it is your baby, maintaining it regularly to ensure it runs well, looks good and most importantly makes you feel good when driving.

But there are many systems which must function correctly in order for your “baby” to drive smoothly and remain in good working condition.  Oil must be changed, gas tank filled, tires must be rotated, fluid levels balanced, wipers replaced, transmission serviced…there are many independent functions but if ONE of those fail, the entire car may run slow, hot, shaky and ultimately could compromise the entire performance of the car.

Now, imagine that one day your tire deflates.  Alas, the pesky nail you ran over leaving the grocery punctured your tire which had plenty of wear left on it.  So, rather than replace the tire, you try something more benign like plugging or patching the tire.  Low and behold, it works.  Your tire fills with air and is once again at “full capacity”. 

A few weeks go by, however, and your low tire pressure light comes on again.  Sure enough, a few pounds of air has leaked out again.  You might try another plug or this time try for a more sturdy patch on the tire because you already know a new tire is going to be costly and is out of your reach at this point in time.

Once again, for several weeks your car runs well and the tire remains relatively full of air.  The low tire pressure is beginning to create a snowball effect on your car as the alignment gets compromised, the balance feels off and the car begins to shimmy when driving at full speed.  You finally realize that these “patches” or temporary fixes are simply not going to get the job done so you go in search of new tire to “restore” your car’s smooth ride.

You quickly become disheartened when you learn no one has the tire you need – the one that can make the difference for your specific car.  There are tires available that may work for other cars but not for yours.  In fact, it you choose to use a tire that is not designed for your car, you could end up causing further damage to your car as a result of secondary issues from a poorly matched tire.  After all, a Firestone tire may work for some but you need a Hankook.  Driving with one Firestone and 3 Hankook’s could cause permanent damage to your dream machine.

Now, you have no choice but to wait.  Sure, you could try another patch…in fact you probably will continue to try plugs, patches, duct tape…anything to keep it going until you can locate the correct tire.  But the process is frustrating at best, distressful at worst as you wait and wonder why no one has what YOU need. Actually, there are plenty of Hankook tires overseas but no local shop has them for purchase.  There is no recourse except to try and rally someone to import your tire or risk the long term performance of your car by running on a tire that was designed and intended for, a different model…turning your “Lexus” into a “Kia” and not performing as you would like.

I am fairly confident that for most in this situation, they would move heaven and earth to get a tire delivered here to them just as I am trying to move heaven and earth to help get flibanserin approved for the treatment of HSDD.  Like putting a square peg into a round hole, I have tried several off label and over the counter options…many of which were accompanied by unwanted and irreversible side effects…none of which were effective for ME.  Acting as a guinea pig, taking an untested and unapproved dose of a drug designed for male sexual dysfunction is not only frightening but insulting and disheartening.  We have stopped at nothing to ensure multiple viable solutions for erectile dysfunction and low sex drive due to low testosterone and yet, 17 years later, women still have nothing.

And, just as the performance of your car will be compromised greatly with one wrong tire on it, so has my relationship with my husband been because of HSDD.  We were fortunate enough for almost a year to have access to flibanserin and that time truly changed our lives. Both the quality and quantity of our sex increased while the level of distress that had been plaguing us both before the trial, decreased. Now, without it, we struggle to maintain the level of intimacy we achieved and search continuously for something to help.  I certainly do not want my husband to feel he needs to shop for a newer car because of a faulty wheel, especially since he knows there is a fix to that wheel out there.  He has seen it, experienced it and has had it within reach. 

Most importantly, I do not like being the squeaky wheel in our relationship.  Sex is important to us.  By no means is it the most important part of our marriage but marriage, like a car, survives best when all aspects are working well.  Psychologically, we are solid.  Physically, we are healthy.  Emotionally, we are struggling with intimacy due to my HSDD.  Distressed, frightened and offended that it has taken so long to approve a treatment that not only worked, but worked well and was balanced with an extremely benign side effect profile.  

Let ME determine with my doctor if flibanserin is right for me.  Give me and my husband, and countless other couples, the chance to be active initiators, not obligatory participants, in our intimate lives. I remain frustrated at the number of available FDA approved products for men suffering with sexual dysfunction ( 26 to be exact ) and the LACK of FDA approved treatments for women – ZERO.  But I also am hopeful that you, as medical doctors committed to helping and healing, will recognize the clinical benefits that flibanserin will offer many women.  In approving this drug, not only can you help restore a woman’s desire but you also affirm her right to be active and willing participants in her intimate life.  Simply put, women deserve.  I don’t expect you to fully even the score over night…just take a step in the right direction.

A Picture is worth 1000 words!!

Ladies, isn't this the problem with HSDD?? 

Let's even the score - give us our desire then HEAR US ROAR!!!  

#womendeserve

Road Trip to DESIRE

Who is up for a Road Trip to DC in early June to show your support of an FDA approved therapy for women suffering from Hypoactive Sexual Desire Disorder??

WE NEED YOU!!

Please follow the link below to register to attend this public hearing and offer your voice and your support.

26 options for MEN, ZERO for women!  WOMEN DESERVE and the time is now!!

https://s3.amazonaws.com/public-inspection.federalregister.gov/2015-11013.pdf

Women are STATICALLY significant!!

Read it and WEEP!!

It's time to EVEN THE SCORE!

Please log on and sign the petition before the June 4 FDA review date!

Even if you don't suffer from HSDD, I know you know someone who does!!

It's time to help a sister out and begin leveling the sexual playground.

For the sake of marriages, relationships, and overall well-being!

It's TIME to EVEN THE SCORE

Finally the date has been announced...please follow this link to submit your support in writing or in person for the approval of flibanserin so women finally have an option.
Help us EVEN THE SCORE because WOMEN DESERVE!!


https://s3.amazonaws.com/public-inspection.federalregister.gov/2015-11013.pdf

Hoping to get LUCKY tonight? Maybe, not

I would say I’m a pretty lucky woman. I have four great kids, a satisfying job, and a tall, dark and handsome husband who makes me feel like the sexiest woman in the world.

The only problem is that I don’t want to have sex. Ever. And the reason why isn’t the four kids, the job or the husband. It’s the chemistry in my brain.

This week marks the 17th anniversary of the FDA’s approval of Viagra, the medication to treat erectile dysfunction. One of the most widely known pharmaceutical drugs in the country, “the little blue pill” has been giving suffering men the ability to get erections for the last 17 years. But no treatment option exists for me.

Last month, the pharmaceutical company Sprout resubmitted the drug flibanserin, or what some call “the female Viagra,” to the FDA for approval. For years, there has been debate from all sides about the treatment, including whether the condition that flibanserin aims to treat – hypoactive sexual arousal disorder (or HSDD) – actually exists. Well, I am one of the 16 million women who live with the condition every day.

I first noticed that my desire was low three years into my new relationship with my current husband. I met Ben as a recent divorcee and the attraction was instant, and powerful. It was like I was a teenager in heat again, which remained constant for years, until one year, I began to notice a dramatic drop in my desire.

I had experienced low desire before, following the births of my children and when my marriage started going downhill. But this was different.  This time, there was no psychological issue, nor were there any physical problems going on “down there.” This feeling was like nothing I had experienced before. I loved my husband more than ever. I wanted to want him. And boy, did I try. I ordered weird elixirs off the Internet that were supposed to boost my libido, was deliberate about destressing every day, engaged in flirty texting, and bought sexy lingerie. But I just couldn’t “turn it on.” Think of a pot of water simmering on a stove, but never quite getting hot enough to boil.

While waiting to see my doctor one day, I stumbled on a brochure regarding a clinical trial for women with low desire.  As I read the symptoms, I got progressively more concerned – perhaps this was me. I talked with my physician, after which I answered several screening questions, and a physical and emotional review to rule out any relationship issues, physical causes or other possible reasons why I had no desire. And it was confirmed: I was diagnosed with HSDD.

What I learned was that women with HSDD have markedly different characteristics than women with a low libido. In fact, MRI scans of women with the condition show different brain activity than women without it.

And suddenly, everything made so much more sense. I knew in my bones that what was happening to my body was so much more complicated than a problem with my relationship, or some kind of hormonal imbalance. I felt like for the first time, I understood what was happening to me. And even better, there was a potential solution.

I had the opportunity to be a part of one of flibanserin’s trials. Flibanserin is not like Viagra in the way that it stimulates men’s nether regions, but targets the chemistry in the brain that affects sexual response. (In other words, the chemistry that’s out of whack for women with HSDD.) I started the trial and within two weeks noticed a difference. What had previously been “obligatory” sex every other weekend quickly became several times a week – and with my initiation. It was as if someone turned a light switch on; suddenly my desire for sex returned.

And the following eight months were a gift. For the duration of the clinical trial, Ben and I achieved a whole new level of intimacy. Not only did the frequency of sex increase, but the quality of it. And then, the trial ended. I had to return my pills, and just like that, my lack of desire returned.

The FDA’s reasoning for rejecting flibanserin is the concern that the risks outweigh the benefits – specifically, the fact that the treatment makes some women drowsy. (Which is why you take the pill before you go to bed.) In the meantime, Viagra’s potential side effects include sudden vision or hearing loss, chest pain, irregular heartbeat, shortness of breath and edema. How do the benefits outweigh the risks with Viagra, but not when it comes to women’s sexual desire needs? Why are men trusted to make the decision between themselves and their doctor, and to take those potential risks – but not women?

Then there are critics claiming that the condition doesn’t exist, or that women simply have different “desire styles,” which they should deal with on their own. When people deny the condition’s existence, it diminishes women’s real experiences and lives. And that feels incredibly patronizing to me. It’s almost like I’m standing outside of a conversation between a group of people talking about me – but who don’t even acknowledge that I’m there, and have the most valuable thing to say in the matter. How can these “experts” speak of something about which they have no personal experience?

Women had to fight for years to get access to birth control and other reproductive healthcare (and continue to do so). And more than anything, that fight was about having access to choices. Today, men don’t just have Viagra – in fact, they have more than two dozen treatment options to help them with their most common sexual complaint. But women have none. Why is there so much pushback against something that women clearly want and need? Shouldn’t we be fighting to get women access to sexually fulfilling lives? Women with HSDD should not only have a full spectrum of treatment options – both psychotherapy and medication – but most importantly, we should be trusted to make our own health decisions with our doctor about what the best option is for us. I found one that works for me. Shouldn’t I have that choice?

Do you suffer from HSDD?

Ladies ( and/or gentlemen )-
Do you suffer from Hypoactive Sexual Desire Disorder?  Have you lost your interest in sexual activity with your partner but have no valid medical or relationship issue to account for this loss?

You are not alone!  HSDD affects one in 10 women in the United States and we need your voice!

Please contact me at the email below to share your story or connect with me as we want to hear your story.

We are trying to EVEN THE SCORE as the score is 26-0 when it comes to medically approved treatments for sexual dysfunction.  26 FDA approved options for men and ZERO for women!

queenofshefw@gmail.com