Here’s the really scary piece – she had tried to commit suicide a few weeks before she came to see us.

That’s how miserable her symptoms were. One of the most heartbreaking elements of this condition is that it is so misunderstood. Most physicians haven’t heard of it, let alone seen a patient with the condition. So in good, classic medical style they tell patients “it’s in your head” (it isn’t by the way—we don’t really get it but we think it’s probably connected to pudendal nerve issues). Or, even worse, they think the patient is crazy or “hypersexualized”.  You have no idea how awful it is for a woman who is experiencing constant and severe unpleasant symptoms to be told she’s turned on. She’s not!

We don’t know an awful lot about PGAD, but we do know it’s a real and concerning medical condition that can drive perfectly normal women to the brink. We’ve had a young woman who had to drop out of school, a woman who stopped working, and now this 80 year-old who tried to commit suicide. As we learn more about the condition we will hopefully develop more effective ways to treat it. In the meantime we work with patients, trying to alleviate their symptoms and assuring them….that they are not crazy, and it is most definitely not in their heads.

Anyhow, last weekend I was reading a book by AS Byatt, Possession. It’s a beautiful book about two modern English researchers who are studying 2 Victorian poets who they discover had a clandestine love affair. (By the way, writing this book was no easy feat since the author had to write poems that were supposedly written by 2 separate Victorian poets in addition to writing the book around their work!) Anyhow, back to my point that my husband suspects I see vaginismus everywhere. “Hey,” I gasp, “one of the characters has vaginismus.” He smiles knowingly… “No really.” I  say. “Here. You read it!’

A few flames made their sinuous way upwards. She remembered her honeymoon, as she did, from time to time, and deliberately.

She did not remember it in words. There were no words attached to it, that was part of the horror. She had never spoken of it to anyone, not even to Randolph, precisely not to Randolph.

She remembered it in images. A window, in the south, all hung about with vines and creepers, with the hot summer sun fading.

The nightdress embroidered for these nights, white cambric, all spattered with lovers’ knots and forget-me-nots and roses, white on white.

A thin white animal, herself, trembling.

A complex thing, the naked male, curly hairs and shining wet, at once bovine and dolphin-like, its scent feral and overwhelming.

A large hand, held out in kindness, not once, but many times, slapped away, pushed away, slapped away.

A running creature, crouching and cowering in the corner of the room, its teeth chattering, its veins clamped in spasms, its breath shallow and fluttering. Herself.

A respite, generously agreed, glasses of golden wine, a few days of Edenic picnics, a laughing woman perched on a rock in pale blue poplin shirts, a handsome man in his whiskers, lifting her, quoting Petrarch.

An attempt. A hand not pushed away. Tendons like steel, teeth in pain, clenched, clenched.

The approach, the locked gateway, the panic, the whimpering flight.

Not once, but over and over and over.

When did he begin to know that however gentle he was, how-ever patient, it was no good, it would never be any good?

She did not like to remember his face in those days, but did, for truthfulness, the puzzled brow, the questioning tender look, the largeness of it, convicted of its brutality, rejected in its closeness.

The eagerness, the terrible love, with which she had made it up to him, his abstinence, making him a thousand small comforts, cakes and tidbits. She became his slave. Quivering at every word. He had accepted her love.

She had loved him for it.

He had loved her.

So, he did read it – and agreed I was right and it wasn’t my imagination.

I was moved because Byatt describes so dramatically and poignantly the pain and psychological damage associated with Vaginismus.

But all I could keep thinking that night and the next day was: We could have helped her! We really, really could have.

Alas and alack, there is little to no market for “fixing” fictional characters. And then poor AS Byatt would have had to rewrite the entire book.

 So what’s the good news?

It just so happened that immediately following her appointment was a patient who was finishing treatment for vaginismus, a magnificent and beautiful woman (inside and out) in her 40′s who 3 months ago thought she would never be “normal.” I asked if she’d be comfortable talking to the new patient and she happily agreed.  

Sitting there with the two of them almost made me cry. As I watched our “graduating” patient talk about all her fears and concerns when she came to us, and how empowered and  normal she now feels, I felt so proud of her. And watching the new patient realize that her situation is not so unique and not so hopeless — watching her light up with a new found feeling of hopefulness — made me grateful for being in this profession.

Daily I feel privileged to have the opportunity to watch our patients struggle with their worst fears and conquer them — and privileged to be a part of the solution. But in the end, they are doing it themselves. I am blessed to be able to be a part of their lives.

The other day I had a woman state that she had been to numerous doctors, who told her the pain she was experiencing was “in her head.” Rather than acknowledge this issue or explore it, they dismissed her, her feelings, even her symptoms!

What does this patient do? Feeling hopeless, as if pain during intercourse is something she would have to endure the rest of her life, she goes to the internet and finds something called vaginismus, painful intercourse . She reads testimonials on various websites, and learns that other women also experience pain during intercourse and this is not something “in her head.”

These women are, in fact, able to find treatment with specialists who have decades of experience with treatments, and which also house the newest solutions to this problem. At the Medical Center for Female Sexuality, we are able to treat patients with vaginismus relatively quickly in most cases; and most patients complete their treatment and go on to have satisfying, pain-free intercourse.

I commend women on their tenacity to find an answer to this problem and to not settle for “it’s in your head,” even if it comes from a powerful influencer such as a medical doctor. We know our bodies better than anyone can because we feel what is happening. So, trust those feelings and if you feel something that doesn’t seem quite right or the way you thought it should be, search until you get your answer or until you can find someone who can answer and acknowledge and treat this condition.

 So in the field of sex it is a common game we play to see what things the APA has labeled as a disorder today…. Liking sex too much? Having it too often? Getting turned on by high heels? The new DSM (the 5^th) is slated to come out with its changes in the next few months. Here’s a great article on the general concerns regarding what is included and what’s not:

http://www.advocate.com/Society/Commentary/Sex_Disorders_According_to_the_APA/

Feel free to put your two cents in!

Sunday Magazine

November 29, 2009

Dear Editor:

Daniel Bergner’s article in the Times magazine section, Women Who Want to Want, once again poignantly expresses both the deep distress felt by women with the loss of their libido as well as the complexity of understanding and treating the condition. Women’s loss of desire, while experienced sharply and distinctly, can be extraordinarily varied in both its primary cause,  its contributing factors and in the range of treatment options. 

Women’s sexual problems, of necessity, must be assessed by integrating the emotional, physical, chemical and  psychosocial perspectives in order for us to be successful in treating them.  Most often, as your article states, recommended treatment protocols are unilateral; the underlying assumption being that one “magic bullet,” should alleviate the problem. Often we find that this leaves women who have tried a single approach feeling as though they have failed;  and more hopeless, resigned and unhappy.   

Only with an integrated approach to diagnosing and treating women with female sexual dysfunction, more will have a better chance at achieving what they are looking for, a full and satisfying sex life.  While critics may believe this is yet another “luxury” health problem, we’re certain none of them would want to settle for a tepid sex life.  And if what we see in our practice is any indication, they’re in good company. 

Bat Sheva Marcus LMSW, MPH, PhD

Clinical Director

Medical Center for Female Sexuality

2975 Westchester Avenue

Purchase, New York 10577

(914) 328-3700

260 East 66^th Street

New York, New York 10065

(646) 839-0700

www.centerforfemalesexuality.com