with gratitude to Beverley, Carol, and Victoria

Today was Day 1 of the FDA Workshop on Female Sexual Dysfunction. Among other conversations, three women read narratives of their experience with sexual problems.

Because my goal – my only goal – is to maximize women’s sexual wellbeing, it’s important to me to honor the women who were willing to share their experiences with sexual problems in a public setting. This is a personal topic that women often feel ashamed about, and it can’t have been an easy decision for any of them. Respecting and BELIEVING their descriptions of their personal experience is the least any of us can do, to make the world a better place for women’s sexual pleasure.

So, as one way of honoring their courage, this blog post summarizes their three stories, from my notes:

 

BEVERLEY

Her difficulties started 4 yrs ago with an allergic reaction to a medication; she’s now \$35,000 in and has seen lots of different specialists.

She has tried a laundry list of medical interventions included painful nerve injections, antidepressants which made it more impossible to orgasm, lots of prescriptions for muscle relaxers, and more.  This includes 50+ hours of manual pelvic floor physical therapy, which she describes as “as personal and intrusive as it sounds.”

Additional impacts of the sexual problems included pain, depression, inability ot maintain interest, loss of arousal, loss of self-confidence, loss of orgasm, problems in relationships, not just romantic but also with friends and family, and you have to advocate for yourself because there’s no help out there.

Beverley adopted 9 year old from Russia, who was 15 when this hit, and she feels like she lost 3 yrs with her daughter to this problem,

Prior to this she had a robust and fulfilling sex life. And if she were a man, she said, a doctor could have just written a prescription.

She’s currently being treated with hormones and is not having trouble. Unfortunately she lost a major relationship before that. She knows her difficulties could come back any time, and her partner can tell when her next treatment is due because the hormone levels get lower.

Insurance has determined it’s not medically necessary, and she fears that someday she might not be able to afford the treatment.

When asked what goes through her mind when her partner initiates, she says, “Am I going to be able to orgasm and is that going to impact how he feels about tour relationships, because it’s a huge part of men’s self worth, if they can ‘get you there.’ And I’ve seen the wheels almost come off my relationship because of that.”

 

CAROL

Her difficulties began gradually, over a period of months, with a loss of skin sensitivity, numbness, “like my body was encased in a rubber glove, sealing off all sensation,” or like having her whole body injected with Novocaine. She could not have an orgasm, be lubricated or excited, even after stimulation. No matter how intensely she tried to talk herself into climaxing, she never succeeded – this, despite no history of sexual dissatisfaction. Now she gets to frustrated that any attemp at sexual intercourse ends with her crying.

In her case, she said, there was “an interplay between physical and mental health.” She has invested a great deal of time and energy in her quest for an answer, consulting a number of physicians and specialists, taking pills, injections, topical lubricants, and her symptoms waxed and waned. She would experience a brief honeymoon of functioning 65-80% of the time and when it wore off she’d go back to where she started.

She feels, she said, unattractive, inadequate, dysfunctional, and isolated. With her current treatment she is able to orgasm, but her skin sensitivity has never really returned.

 

VICTORIA

Is a sex educator. In 1971, at age 23, she got a Dalcon Shield IUD after the birth of her 1^st^ and only child. At 35, she had a total hysterectomy with double oopherectomy, necessitated by pelvic inflammatory disease that went undiagnosed and utreated for years.

Now she has “feeble orgasms,” but she can generate interest in sex. Her sexuality seems to ebb and flow with life stressors, like the loss of a job or the death of her parents, PTSD from the hysterectomy, or, most recently, the death of her husband. She feels that she’s not going to achieve “mindblowing orgasmic ecstacy,” but she does feel confident that one day she’ll return to a satisfying form of sexuality.

Victoria has this message for us: The Boomers Are Coming! – literally and figuratively And they will want sexual access in nursing home facilities, something those providers are not prepared to handle effectively.

She said – and this crushed me – “We never know when we can count on our minds and our bodies.”

 

Those are their stories. Their distress is substantial and real.

They’re looking for solutions. I am too.

To be clear, I have no dog in this race. I’ve got nothing riding on the outcome. My only goal is to maximize women’s sexual wellbeing.

Various comments throughout the four hours painted the picture what what women are looking for from a drug is – and I’m quoting directly here – “to want to want it all the time.”

The question is whether the problem is that they don’t want sex all the time… or that they’ve been convinced they’re broken if they don’t want sex all the time.

In the meantime, if your’re a woman experiencing sexual distress,  there are nonpharmaceutical treatments that work!