I Struggled With Endometriosis And Painful Sex. Now I'm Having The Best Sex Of My Life: Here's How

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By 2018, I had received a long-delayed double diagnosis: endometriosis and interstitial cystitis (IC), or painful bladder syndrome. For me to finally get the answers I needed, it took 14 years, countless doctors and more than a decade of struggling with debilitating back and pelvic pain, heavy periods, sciatic nerve pain, burning and bleeding when I urinate.

Endometriosis is a chronic inflammatory disease characterized by the growth of endometrial-like tissue outside of the uterus. Such abnormal tissue growth can lead to pelvic pain, heavy and painful menstrual cycles, infertility and so much more. It’s a complicated and frequently misunderstood disease that can affect everything from your relationships to your mental health to your job.

Sadly, my endo and IC combo touched almost every part of my life, including my sex life. After years of being in near-constant pain and feeling like a burden to my partner, I felt undesirable, anxious; like my body had betrayed me. The endo belly (excessive bloating that some experience with endometriosis) didn’t make things easy, either.

I didn’t have specialized excision surgery to treat my endometriosis until 2022. After years of being powerless, it felt like I had reclaimed my body.”

Which problems can lead to pain during sex endometriosis?

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Not every person with endometriosis has painful sex (also called dyspareunia). But for some people, it’s something like that — and endo takes a lot of things away from the pelvic area and replaces them.

“Endometriosis lesions are inflammatory and induce pelvic anatomy distortion,” said Dr. Iris Kerin Orbuch, the director of the Advanced Gynecologic Laparoscopy Center in Los Angeles and the author of Beating Endo. “They can pull your uterus to the right or left side or backward, which is called a retroverted or ‘tilted’ uterus.”

When penetration occurs, this anatomical difference can cause the penis or sex toy to hit the endometriosis lesion, leading to intense pain and cramping.

“Some people with endometriosis may have entry pain as well,” Dr. Orbuch added, explaining that the eight-to-10-yeardiagnostic delayoften causes the pelvic floor muscles to become incredibly tight and subject to spasming. “As a result, the pelvic floor muscles become super tight for almost a decade, which translates to painful penetration.”

This is why endometriosis patients frequently describe pain not just with intercourse but tampon insertion and pelvic exams, too.

It’s not just penetration and entry that can hurt. Anticipatory pain, which I’ve gotten quite well acquainted with, is common, too. Anticipatory pain is when the body gets prepared for pain during sex whether or not actual pain happens.

“When if we feel pain, our muscles tensing and guarding us to protect ourselves from the pain; giving into that can make the pain feel worse,” Heather Jeffcoat, physical therapist and author of Sex Without Pain, said. “After repeated painful exposures, the muscles have learned to anticipate pain and are frequently guarding before a painful episode occurs.”