Thursday, March 5, 2015

My VOICE My WISH

I am so appreciative of all the national organizations who have spoken out against this ridiculous op-ed that appeared in the NYT last week.  




Here are my personal thoughts as a woman who has been diagnosed with HSDD.

First, Nagoski's claim that the FDA rejected flibanserin because " ...the drug doesn’t work and isn’t safe." is insane.  Having been on the trial, I am here to tell you it DOES work and it IS SAFE!  Read the data and you will see. The FDA didn't say flibansering "didn't" work and wasn't "safe".

More frustrating is Nagoski's claim that "...its backers are attempting to treat something that isn’t a disease."  Really?  Where have you been and from where does you get your information?  I was diagnosed with HSDD three years ago so unless my physician, and others across the country are all misguided, you are absolutely mistaken.

Yes, "Flibanserin purportedly treats a condition called hypoactive sexual desire disorder in women".  Finally, something I agree with only it doesn't "purportedly" treat, it DOES treat!

Here's where I really get offended.  "The new diagnosis is intended for women who lack both spontaneous and responsive desire, and are distressed by this. For these women, research has found that nonpharmaceutical treatments like sex therapy can be effective."  I'm not sure what research you are referring to but sex therapy DOES NOT help me.  I lack both spontaneous and responsive desire but have no arousal disorder. ( see my earlier post )

For the record, I don't "assume that because their desire is responsive, rather than spontaneous, they have “low desire”; that their ability to enjoy sex with their partner is meaningless if they don’t also feel a persistent urge for it; in short, that they are broken, because their desire isn’t what it’s “supposed” to be."  I don't think I am "broken" but I am "distressed" and know exactly how my distress disappeared when I was taking flibanserin!

The icing on the cake, or perhaps, better stated, the straw that broke this camel's back was your matter of fact statement that "What these women need is not medical treatment, but a thoughtful exploration of what creates desire between them and their partners. This is likely to include confidence in their bodies, feeling accepted, and (not least) explicitly erotic stimulation. Feeling judged or broken for their sexuality is exactly what they don’t need — and what will make their desire for sex genuinely shut down."

Let me set the record straight, Ms. Nagoski.  My husband and I are very thoughtful with regards to what creates or fuels desire between us.  When he is "in the mood" and initiates, my body responds appropriately (physically )as I do NOT HAVE an arousal disorder.  What is lacking is the DESIRE to respond.(the brain half of the equation)

 I do NOT feel judged or broken.  I am confident in my body, (we work out regularly and I am quite proud of my fairly sculpted body) and I could not possibly feel MORE accepted than I do. Furthermore, we are active participants in erotic stimulation!  And trust me, my body physically responds appropriately to my husbands touch, stimulation and praise. All of this, of course, if HE initiates.  If he waits for me to initiate, he will be one lonely man.

With reference to Dr. Heath and Sprout "trying to call “diseased” what is simply different.", I would ask you if you consider ADHD simply "different"? Will "therapy" treat ALL patients with ADHD?  I'm assuming you think so but knowing several who suffer with ADHD, I would argue that while therapy MAY help some, it most certainly does NOT help all and most incorporate a combination of treatment options - therapy and prescription medicine.

Trust me, I do WORK with my sexuality and that is part of the problem.  With all I have on my plate, it is nice to not HAVE TO WORK at it.  When I was taking flibanserin, I didn't have to!  

Don't get me wrong.  I am not saying I walked around in a state of desire, but I recaptured what I once had and that was a sometimes "spontaneous" desire to have sex and others a "responsive" desire to have sex.  Either way, it felt natural, unashamed, not forced and non-obligatory.  I got my desire back!  One less thing in a day to have to work at.
So my question to you is, why are you so adamantly trying to block the approval of a medical option for me and others suffering from HSDD?  

Could it be to further your own agenda and keep a flow of patients in your office??
Were you so vocal when all the ADHD medicines were approved?  Chemical imbalances in the brain are often considered medical disorders.  Why do you try and separate HSDD?


It is my "desire" that you and your peers who continue to try and block FDA approval and write such offensive editorials with regards to a condition from which you clearly do not suffer and about which you are not fully educated, will stop and consider your words before you offer them publicly.  

Ask those of us who are suffering, who were on the trial or not, and stop speaking "ON OUR BEHALF".  Instead, speak "TO US".  I will gladly discuss this with you as I have my medical doctor.I don't need you to speak for me...I have a voice and a wish and deserve to be heard, too.

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