Secret Suffering - A resource community for women who experience pelvic and sexual pain

Just found this great article confirming why we need to raise our voices about sexual pain. It’s called, “Painful Sex Still a Painful Secret
Many Women See Up to Five Doctors Before Diagnosis.” It’s pretty cool that it was an ABC News article. You don’t get more mainstream than that! Thank you to Lauren Cox.

The other day, I was at the doctor’s office. Across from me was this really pretty young woman, about 26, maybe. Skin glowing, dimples, the picture of health. She was a representative from one of the big pharmaceutical companies. We started talking and I told her about the work I’m doing. I expected a polite, uh-huh. But instead, in a rush of words, she told me, “I have sexual pain. I’ve been to the doctor over and over and he says there’s nothing wrong.” She went on, but I know you already know what else she said. It amazed me that even within the “ranks,” women are still just patients. I gave her my card and took hers as well. I hope she screams loud enough for someone on the Penthouse floor to hear.

Perhaps one of the most pressing issues for women suffering from
vulvodynia, IC, or both is sex. Talk to any woman suffering from
these syndromes and the topic will eventually turn to sex. Women have
a wide variety of concerns based on their current relationship status
and prior experience. Some of my clients despair of ever finding a
man who will accept them, problem and all. Others worry that their
current relationship will fold under the strain of little sexual
intercourse. Some women have already lost a relationship because of
the issue. There is no doubt that on the list of things to stress
about, sex is at the top.

The tangle of emotions around sex is sometimes hard to unravel. 
Within a relationship, it’s easy to worry about everything on two
different levels - personal and interpersonal. No woman wants to
continue experiencing vulvar and vaginal pain, urinary frequency, or
any other symptom on the list. Women have constant concerns about
their own self, their own personal longing to feel pleasure instead of
pain, and the life they would rather be leading. Piled on top of that
are the worries about their relationship and sex. It’s no wonder many
women find themselves sinking into depression, hopelessness, anxiety,
or panic. I certainly remember feeling all four of those heavy,
painful emotions when I was dealing with IC and vulvodynia.

Many of my clients feel a host of negative feelings because they
cannot have sexual intercourse. It doesn’t take any effort at all for
me to put myself in their shoes - all I have to do is close my eyes
and remember. I used to feel like I was depriving my husband, like I
was no longer a real wife, like I was no longer a real woman, and like
my chances of having children were nonexistent. I worried that my
husband wouldn’t love me anymore if we couldn’t share that bond. I
felt terribly sad about not feeling pleasurable physical sensations in
an area of my body designed for enjoyment.  I thought my life much
less colorful, less vivid without the beauty of physical intimacy.

I thought that acute (vulvar) vestibulitis and vulvodynia were the worst
things that could possibly happen to me. I thought it would ruin my
sex life forever, damage or ruin my relationship, and strip me of the
joy of physical intimacy. I wanted to strangle those medical
professionals who suggested “other means of sexual contact besides
intercourse.” I wanted the whole thing or nothing, and even found it
hard to just cuddle with my husband. The very thought that those
doors were closed to me was so painful I could not stand to face it.

When I look back at my mental state during that time, I imagine horses
escaping from the pen, galloping wildly in every direction. My
thoughts ran rampant in my head, increasing my stress levels with
every new repetition. As I learned mental tools to reduce my anxiety
and help myself deal with the painful emotions, I discovered I had the
power to look at myself from a new perspective. I realized I was
placing an awful burden on my sex life. It had to define my
womanhood, uphold my marriage, serve as my central source for joy,
give me confidence, represent the gift of love to my husband, and
serve as the only form of physical intimacy we shared.

 From this perspective, I saw I was making everything much worse for
myself. The battle waging within me over my inability to have sex was
only adding stress, anxiety, and fresh despair to the emotional
turmoil I felt. I set out to learn how to feel okay about myself and
my womanhood separate from sex. I worked to improve my relationship
with myself and my husband. I allowed myself to accept the situation
for what it was and stopped fighting myself. Arguing with reality was
only bringing me pain.

Looking back, it is easy to see the whole picture. I went through
physical pain and a period of no sex, that’s true. But as I
recovered my health, I discovered myself. I became the best version
of myself - a confident, comfortable, joyful woman. I let myself
learn about me while stripped of everything I thought I needed. In
the end, this was truly a life-changing experience. I believed so
strongly that not having sex was a damaging thing, but the reality was
just the opposite. The experience taught me about myself and gave my
husband and I a reason to explore our relationship to new depths. I
learned how to feel gratitude for the simplest moments, not just the
exciting milestones.

Making friends with the reality of no sex taught me how to accept and
relax just when I think I need to fight. From this mindset, it is
much easier to feel okay, heal mentally and physically, and find some
peace. From this mindset, sex becomes what it is supposed to be -
just another way to celebrate life.