Emily* is a 26-year-old woman living in the northeast United States. She went to a four-year college, works a full-time job and has an active dating life. But she's also living with an invisible problem — one that has affected every relationship she's ever been in.
Emily has never had an orgasm — neither through sex nor masturbation. She experiences pain whenever her clitoris is touched or anything is inserted into her vagina. Her doctors suspect she has genito-pelvic pain/penetration disorder — symptoms of which include pain and muscle tensing in the pelvis, vulva and vagina when an attempt at penetration is made.
"It's more, obviously, than just not being able to climax," Emily said in a recent interview. "Any sort of stimulation is painful."
For years, Emily kept her problem a secret. Now, she's embarking on a search for answers. She spoke with Mic about her journey.
Mic: When did you first realize something wasn't as it should be?
Emily: Not until college. I was functionally asexual in high school — I wasn't hooking up with people. My friends didn't really talk about masturbating. I didn't masturbate, because I knew it just didn't feel good. So it sort of delayed the exploration until I was with someone.
In college, I remember hooking up with a guy and I felt nothing; that may have been tied into sexuality stuff. But when I was with a female partner consistently and still nothing arose, that's when the wheels started turning.
In relationships, when and how do you let your partner know about your condition?
E: It gives me a lot of anxiety in the initial stages of seeing someone, leading up to the point of it being physical, because it's not something you can hide. So I have to give this disclaimer, and that conversation is always just — it destroys me. It's so nerve-wracking, because my ultimate fear with all of this ... is that no one will ever want to be with me because of this condition, disorder, whatever you want to call it.
It's usually one of the first times we hook up.
During sex, do you mostly end up being the giver?
E: Yes. Because I know it's 100% comfortable.
Have you ever inserted a vibrator, or other toys, into your vagina?
E: It was immediately taken out — it's hard to explain. It's been attempted and breached, but it's just so immediately uncomfortable that I bat it away.
How would you describe the feeling you experience around your vagina and clitoris?
E: Just dry, pain. Pain is the word that comes up. Pressure. It's not a dull ache — it's like, sharp.
What would happen if you touched your clitoris with your finger?
E: It would hurt. I would need lubricant. It's impossible to, like, get things going naturally.
What about when anything is inserted into your vagina?
E: It's off-limits, because that's another level. My clitoris, with lubricant and moisture, it can become a neutral sensation — sometimes even potentially, lightly positive. But my vagina — putting in a tampon is excruciating.
What sorts of things have you tried to do to reach orgasm?
E: Vibrator, my fingers, someone else's fingers, someone else using a vibrator on me.
You said you've tried holding a vibrator on your clitoris for hours.
E: Yeah. There's no appreciable — I don't know what the word is — uptick. Progression. No build.
You first saw a doctor about the problem back in college. What did you tell her?
E: I framed it as, "I can't orgasm." That's all I could verbalize.
She handed me the names of two Laura Berman books. They were very heteronormative, and for middle-aged people. It was like, "Massage each other! Use wax!" You know, insulting. They seemed geared toward couples that have lost their fire.
Three years later, you broached the topic with a different gynecologist.
E: I framed it as, "I experience a lot of pain, sexually." Maybe I just talked about the clitoris that time. And she said, "Oh, it's a very sensitive area! I'm not surprised by anything you're saying."
In both scenarios, I was not transparent. I didn't tell them the full picture: that anything is painful, that I've never climaxed, that I have difficulty getting wet.
Why were you holding back?
E: Because it's so hard to talk about.
Finally, in 2016, you opened up to your gynecologist in an email. You told her everything.
E: When I sent that email, my doctor called me on the day of. She gave me a lot of hope — she said she sees this all the time. I said, "But with people my age?" She said, "Almost entirely with people your age," which I was flabbergasted by.
Looking over my records, she said, "There's absolutely nothing physically wrong. I would recommend treating this psychologically."
You've also begun seeing a clinical social worker who specializes in sex therapy. She believes you have genito-pelvic pain/penetration disorder.
E: She said, in her experience, only in about 10% of people who report problems like mine is it actually something physical.
What was your reaction to learning it's probably something psychological?
E: Simultaneously hope and despair. If it were something physical, you'd be like, "OK, we need to fix that part — that mechanics — and then we're done." That's the despair part.
The hope part is, sometimes there are things physically — that's just your biology, and there's no fixing it. So I'm like, "Oh, OK, I'm going to rework my thinking and thoughts around sex or whatever."
Could it have to do with the environment you grew up in?
E: I grew up in a house that was not sex positive — and we're trying to figure out how that affected things — but I don't think it scarred me for life or anything.
Do you have any ideas for what could have caused it?
E: That's where the intrigue comes in, because there is no trauma. Nothing bad ever happened. So it's like, why do I have this block? Why can't this just happen? I want it to so badly.
Was there any sort of defining childhood moment that could have affected your relationship to sex?
E: I specifically remember when I was really young, probably five, I was in the bathtub and I touched myself. I didn't think it was sexual — it was almost like a tickle, or something — and my mom was like, "Don't put your hands there. It's yucky," or something.
What does it say that I was literally five and my mother still bathed me — it was that long ago — and it stuck? And in my house, I literally never had a sex talk. Never.
Did you learn about sex at school?
E: And friends. Yeah.
Did your parents ever say anything negative about sex?
E: No. Just — it wasn't discussed.
What's your treatment plan going forward?
E: The [clinical social worker] I'm seeing recommended one of two women's sexual health treatment centers [in the country]. But to get insurance to accept it is pretty much a part-time job.
One of the treatment centers' websites had a how-to guide on affording treatment. What did it say?
E: One of the options — how to afford treatment — was to get a second mortgage on your home. Or get a second job.
Why is it so hard for women to get specialized treatment for this?
E: Even though it's 2016, there's just no priority. There are penis transplants, and Viagra's been on the market for like 15 years, but it's just not a priority because generally, society cares less about women.
Even if you don't shell out for the sexual health treatment center, you'll continue to see your clinical social worker. What are her treatment plans for you?
E: She thinks — from what i'm describing — that it will probably culminate in me using this succession of dilators.
Would you keep them inside of you throughout the day?
E: No — she said you lay down and have it in for a half hour, or something.
If it's something psychological, how will the dilators help?
E: She said that because I get so tense in sexual situations, it physically might be hard for moisture to make its way in me ... So to sort of undo a little bit of that that long-term muscle tightening, she recommends this. I haven't started that.
As you work to treat this, what's your ultimate goal?
E: My goal is to have a fulfilling, happy, positive sexual health experience. And I definitely want to orgasm. People make it seem like it's pretty fun.
*Names have been changed to let sources speak freely on sensitive issues.