Breaking the Silence: HSDD and Patient Advocacy

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What HSDD Looks Like

Imagine that you have literally spent years coping (or not-so-much) with premature menopause (at 31 years old instead of 45 or older). Extremely sensitive and difficult discussions with medical professionals about such topics as incredibly painful intercourse, hot flashes, and emotional swings that render workplace functioning nearly impossible (amongst other things), are ineffective. Responses include get over it or try a lubricant. You are NOT being heard or believed.

Welcome to my world, such as it was until a few years ago.

Fast-forward.  I finally find a clinic and a doctor who listens. I get better. I get better than better. I am stunned with my “new” life.

My doctor asks me to do a video. “No one will see it,” he jokes. “It’s DiscoveryHealth TV.  What time is THAT on? 5:00 am?”

I do it and immediately regret it. I try to put the genie back in the bottle; what if my family and colleagues see it? They don’t know much, if anything, about this – in fact they only know about my two+ years of infertility treatments and despair.

I assure myself that no one who knows me will see it. Besides I will be referred to as Kim W.  Wait! Can they disguise or alter my voice? Cover my eyes to hide my identity?  Nope, the producer says, it’s done.  Ruh roh, no turning back now.

Next my doctor asks if will I testify as a patient at an FDA hearing on Flibanserin, better know as female Viagra. “They” need to hear from a “real” patient.  This now seems so funny – are there fake ones? (Sorry I digress). I AM a patient, I HAVE a diagnosis  – it’s called Hypoactive Sexual Desire Disorder (HSDD). It is comforting to me. There is something wrong and it can be treated.  The following is my story exactly as I delivered it nearly two years ago to the day in front of the FDA.

FDA OPH Speaker 12 testimony Or My circuitous route to women’s sexual health advocacy

My name is Kim W, at least that is as far as I was willing to be identified up until now when speaking about my personal sexual health story and HSDD publicly. Two years ago, I hesitantly agreed to be filmed for a Discovery Health TV program entitled Low Sexual Desire In Women: Breaking The Silence. I almost backed out at the last minute worried about unforeseen ramifications, exposure and embarrassment. I am still afraid after all this time. Finally, I decided that if it helped at least one woman, it was worth it to put myself out there.  A year later, I agreed to a similar initiative and it was a bit easier. I agreed to be interviewed and filmed by EmpowHER, a women’s health website, but again, identified only as Kim W.

Today, I stand before you as Kim Whittemore, 54 years old, a management consultant and executive coach from San Diego, yet I hope to represent all the “Kim W’s” by candidly speaking from the heart, unfiltered and unedited. I felt compelled to share my own personal experience with HSDD bolstered and encouraged by the hundreds of women who have responded to my story. Hopefully this will be of some value and interest to you – perhaps it is I who will gain the most from speaking today.

I represent myself and  have no “agenda” per se. I have no relationship with anyone here other than Dr. Irwin Goldstein, my remarkable doctor, his wife, now my friend, Sue Goldstein, and San Diego Sexual Medicine. My remarks today are mine and I have not been coached or counseled.

I would like to share very briefly, my personal journey over the last 23 years and its relevance to this discussion and process.

Despite my long history with HSDD, I consider myself one of the fortunate ones! I found Dr Goldstein and SDSM when they first opened their doors in 2007 and have received excellent care with stunning, actually life changing, results.  As I got treatment and felt better, I forgot or just filed away my past experiences. But then in late May a friend teasingly emailed me a note with the subject line: “FAKERITIS LOL!!!” In the body of the email she pasted the following excerpt from the Independent, dated May 25th, 2010:

“Many health professionals, according to the Washington Post, are calling for the FDA to deny the drug (Flibanserin) saying it does no good for women by inventing “fake” disorders (Hypoactive sexual desire disorder, HSDD).”

Upon further reading, I found numerous references to and articles about disease mongering and medicalizing HSDD. I found these equally disturbing and counter productive to women like me.

My friend had no idea what she was inciting in me with her seemingly comical email. It resurfaced all those years of physical, emotional and psychological anguish and I realized that speaking today was essential for me to commit to this issue on a grander scale despite the possibility of exposure, unwanted notoriety, potential embarrassment, ridicule and discomfort. A risk both personally and professionally.

I am here today as someone who has suffered with and from this “fake” disorder for 23 years. On my 31st birthday and just a few months after my marriage, I learned I was going thru menopause with all of the typical symptoms. After extensive consultation with some of the best and brightest endocrinologists, the diagnosis was confirmed. I became less and less interested in lovemaking and sex. After 18 months it became increasingly uncomfortable and then downright painful. I did almost anything to avoid even the most gentle and innocuous expressions of affection for fear that it might excite and arouse my husband and force the dutiful yet despised act of intercourse or bring on another argument about my disregard for his needs and ultimately my loathing of sex. I was almost always reduced to tears if we did have sex and tears after arguments if we didn’t.

We moved often so I saw countless doctors throughout the US. In every case I would attempt to discuss and address painful sex and the complete lack of desire to no avail. I painted the doctors with a similar brushstroke – “equal opportunity offenders.” Their responses included:

  • “Many of my patients have low libido?!” – what? so I am in good company?
  • “If that (low libido) is the biggest medical problem you’ve got, you should consider yourself fortunate.” – Sure, it isn’t cancer.

These conversations are difficult enough with a receptive audience, but can you imagine when doctor after doctor looked me in the eyes and basically pooh poohed me? I felt dismissed, humiliated, minimized. I just shut up and decided I had no choice but to suck it up and say “it is what it is,” regardless of the consequences such actions would have on my marriage.

In 2007, I read about Dr Goldstein and SDSM. I was patient number 1 or 2. Frankly, I am surprised I made the call. My marriage had fallen apart, hardly a surprise, I was uncomfortable talking about any medical “issues” and was so depressed I thought that might be genetic, with some history of manic depression in my family. I made the call.  Much to my shock and joy:

I was taken seriously.

I was treated respectfully.

I was evaluated methodically and thoroughly. I call it  holistically.

A treatment plan was mapped out, discussed collaboratively and implemented.

It included psychological (sex therapy), medical/pharmacological and physical therapy (pelvic floor).

The right doctor gave me hope and optimism. I was treated and things improved almost immediately. I can barely say this without tearing up. After nearly 3 years under his care, I have NEVER felt healthier, happier, or more optimistic in 23 years. My sex drive is where it was in my 20’s. There is nothing wrong with wanting and having a happy, healthy sex life.  If we choose to do something about HSDD and low or no libido, let’s be sure we have an informed, educated, sensitive medical community AND approved treatments available for our consideration.

Lastly, when I mentioned to my closest friends and trusted colleagues that I was coming here today, there was unanimous excitement and interest in your efforts. One woman, who I have known for 25 years said it best:

This is fantastic. I am so proud of what you are doing. What a contribution you are making and you are so brave to put it out there in public. I too have a non-existent libido since menopause and you are making me think about what I should do about it.

Thank you [FDA] for your consideration. I hope and pray that this will be of some value for women who suffer, many in silence, with HSDD.

Shining a light and bringing attention, awareness and a healthy dialogue to this issue is an accomplishment in its own right.  Hopefully this meeting (FDA Open Public hearing) and subsequent meetings will result in options and solutions as part of an overall approach to our sexual health and well-being.


Kim Whittemore, aka @kimwhit on Twitter, is the publisher and co-founder and contributor to the blog Fertility Options and is an ardent advocate for women's health.

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