When I was 18 or 19, out of the blue, I started getting severe pain during my period. My stomach would bloat to the point that I looked pregnant. I had severe migraines that led to my popping codeine on the regular, but I still felt sick, fatigued, spaced out, moody, and generally just feeling ill.
The pain was so bad, I once asked my boyfriend to punch me in the stomach. I thought it would shock my system or distract me. (Obviously, and thankfully, he didn’t do that.)
I had no idea what was going on, and doctors kept misdiagnosing me with problems like kidney infections or chlamydia. There’s a certain desperation you feel when you know that something is seriously wrong, but no one can give you an answer.
At age 24, after five years of seeking a solution, I was finally diagnosed with endometriosis—a condition in which cells that are similar to the lining of the uterus grow outside of it and attaches to other areas of the body, like the ovaries, the fallopian tubes, outside of the uterus, or even the bowels.
I was diagnosed with stage one, which is considered “minimal.” However, I had (and still have) all the symptoms—chronic fatigue,severe bloating, and, oh yeah, pain during sex.
Before my diagnosis, my boyfriend and I were having sex, but I could tell something was off—it could be incredibly painful. Sometimes, the sensation was so sharp and excruciating that I would gasp and scream out loud.
The wave of agony would last 30 seconds to a minute before it subsided. It felt like a knife was going through my uterus and hitting the other side. At times, it hurt so intensely that I felt removed from reality. After that, I had this uncomfortable feeling of rawness in my uterus.
I figured out coping mechanisms, like applying pressure to my stomach to help dissipate the knife-like jolts.
Over time, I started to avoid sex more. I stopped feeling present sexually in the relationship. And my then-partner complained about that.
I’m 30 now, and I have a different relationship with pain—and a different boyfriend. Now, I’m in a long-term relationship with lots of trust and communication. When we have sex, I know we have to proceed cautiously. That means relaxing, going into it gently, and moving slowly. I’ve also learned tricks to make it more enjoyable: Like, if I tilt my pelvis down, it feels better.
The thing that still gives me pause, though: I’m less likely to initiate sex, whether it’s out of fear of how it’ll feel, or because I still don't associate sex with pleasure. I feel like I'm constantly trying to heal my relationship with sex, which is undeniably broken.
But as I pay attention to how I’m feeling, I notice that there are certain points in my cycle when I want sex. It makes it easier if I’m already more aroused.
Ironically, this is often around ovulation, and that’s also a time when sex is particularly painful for me. My body is ready, I want sex, but it hurts—and then ruins the whole experience. Sometimes it’s like, "What’s the point?" It’s a long process, and I'm still working out ways to manage my symptoms.
As the founder of the blog This EndoLife, I’m all about empowerment with endometriosis, and I won’t give up on the sexual part of my life. For other women with endometriosis, I suggest a few things to make sex a little better:
1. TALK IT OUT WITH YOUR PARTNER.
Having an open conversation with your partner about what you’re going through is so important. If you and your partner are open to talking to a sex therapist, even better.
2. SEE A SPECIALIST.
Even after my endometriosis diagnosis, my doctors never talked to me about pain during sex—and I suspect that’s all too common for other women. If you're dealing with this, look for a pelvic-floor therapist, or ask your doctor for a referral to a sexual pain specialist.
3. READ UP AND EDUCATE YOURSELF.
Books have been a huge help in understanding my pain and making peace with my body and relationship with sex. Vagina by Naomi Wolf really changed my perspective. I'd also recommend Code Red by Lisa Lister and Womancode by Alisa Vitti.
4. FIND SOME SOLIDARITY.
Sexual empowerment podcasts like Cat Meyer’s Eat Play Sextalks about healing sex and what it's like to deal with painful sex.
Jessica Duffin is the creator of This EndoLife.com, a website dedicated to empowering people all over the world who are living with endometriosis. She is also host of This EndoLife Podcast, where she interviews guests managing chronic illnesses and mental health problems.
This article originally appeared on Women's Health US