I Struggled With Endometriosis And Painful Sex. Now I'm Having The Best Sex Of My Life — Here's How.
In 2018, I received a long-overdue dual diagnosis of endometriosis and interstitial cystitis (IC), also known as bladder pain syndrome. It took 14 years, countless doctors and a decade-plus of dealing with debilitating back and pelvic pain, heavy periods, sciatic nerve pain, and burning and bleeding with urination for me to finally get the answers I needed.
Endometriosis is an incurable inflammatory condition in which endometrial-like tissue grows outside the uterus. This abnormal tissue growth can cause pelvic pain, heavy and painful menstrual cycles, infertility and so much more. It’s a complex and often misunderstood disease that can impact everything from your relationships to your mental health to your career.
Unfortunately, my endo and IC combination affected nearly every aspect of my life — including my sex life. After spending years in near-constant pain and feeling like a burden to my partner, I felt undesirable, anxious and like my body had betrayed me. The endo belly (extreme bloating that can come with endometriosis) didn’t help, either.
It wasn’t until 2022 that I finally underwent specialized excision surgery to treat my endometriosis. After years of feeling powerless, it felt like I had taken back control of my body.
Why does endometriosis cause pain during sex?
Not everyone with endometriosis will experience painful sex (also known as dyspareunia). But for those who do, it’s often because of how endometriosis affects and transforms the pelvic area.
“Endometriosis lesions are inflammatory and cause pelvic anatomy distortion,” said Dr.Iris Kerin Orbuch, director of Advanced Gynecologic Laparoscopy Center in Los Angeles and author of ”Beating Endo.” “They can pull your uterus to the right or left side or backward, which is known as a retroverted or ‘tilted’ uterus.”
When penetration happens, this anatomical change can cause the penis or sex toy to bump up against the endometriosis lesion, triggering intense pain and cramping.
“Entry pain can also occur in those with endometriosis,” added Dr. Orbuch, noting that the eight-to-10-year diagnostic delay often leads the pelvic floor muscles to become extremely tense and prone to spasms. “Thus, the pelvic floor muscles get very tight for nearly a decade, causing pain on entry.”
This is why patients with endometriosis often report pain not only with intercourse but also with tampon insertion and pelvic exams.
Penetration and entry aren’t the only things that can cause pain. Anticipatory pain, something I’ve become very familiar with, is also common. Anticipatory pain is when the body preps for pain during sex, even if no actual pain occurs.
“When we experience pain, our muscles tense and guard us to protect ourselves from the pain,” explainedHeather Jeffcoat, physical therapist and author of ”Sex Without Pain.” “With repeated exposure to pain, the muscles become conditioned to expect pain and will often be guarding in anticipation before the pain has occurred.”
You can still have the best sex of your life when you’re struggling with chronic pelvic pain.
Before I get into the specifics, I want to note that every person and body is different. Tailor the advice in this article to fit your needs, comfort zone and anything your doctor recommends.
Also, please be patient with yourself. Reclaiming your sex life after living in chronic pain takes time and a lot of self-compassion. With that said, here are some tips (both from experience and experts) to help you regain control over your body and your love life.
Focus first on communication.
Don’t be afraid to be vulnerable and speak up about what feels good and what doesn’t. This can be difficult, but if it’s the right person, they’ll listen, validate your feelings, and work with you to find solutions. If you don’t, you may resent them for not understanding — even if you’ve never told them what you need.
“I believe it is so important for partners to communicate what is pleasurable and what hurts,” said Dr. Orbuch. “If the endometriosis sufferer is afraid of pain or is experiencing pain, their pelvic floor muscles will tighten even further, causing more discomfort.”
If you’re unsure how to start the conversation or the relationship is very new, wait until you’re comfortable and in a nonsexual environment to talk. Keep it light and give them a chance to process and respond. If they seem dismissive or unsupportive, that person may not be the best partner for you.
Know that “sex” doesn’t have to mean penetration.
It’s so easy to get caught up in the idea that “real” sex has to involve penetration. But there are so many ways you can be intimate with another person (or yourself!) that don’t involve penetration.
Experiment and explore new things like sensual massage, mutual masturbation, oral sex, and sex toys. Or, if you want to incorporate penetration, there’s an intimate wearable called Ohnut that acts as a buffer to prevent deep penetration. You can control the depth with one or more stackable rings (these can go around your partner’s shaft or a sex toy) to find what’s comfortable.
When I first used it, it was so exciting — like we were rediscovering sex all over again together. Just be sure to use lube and a lot of it!
Get your hands on some high-quality sex toys.
Throughout my journey, I’ve become a huge advocate for sex toys. You can use them with a partner or by yourself to explore your body and find what really works for you.
My favorite endometriosis-friendly options include the Namii by biird and theVIM by Fun Factory. The Namii is shaped to sit comfortably on the vulva, while the VIM has a long handle and a wide head for all-over coverage.
While it’s fun to play with a partner, I think it’s just as important to get to know your own body first. Take some time for some solo self-care so you can pinpoint what sensations and movements feel good to you. Then, you can guide your partner when you’re ready.
Jeffcoat also said that things like perineal ice and heat packs and vulva balm can help soothe any discomfort after sex. It may not be sexy, but taking care of yourself afterward can make all the difference.
Switch up your positions.
If penetration is part of your routine, Jeffcoat recommends the forward or backward straddle. From this position, the receiving partner can control the depth of penetration and the pace to avoid painful movements or thrusting.
Jeffcoat also suggests spooning or sideways positions, which may be more comfortable for those experiencing pelvic pain or a tilted uterus.
Address the root cause of the pain.
Surgery and other treatments like pelvic physical therapy aren’t always accessible or affordable. I had health insurance at the time of my surgery, and I still had to empty my savings and move to a different state because I couldn’t afford to stay in my apartment and pay for the surgery.
But, if you can, I highly recommend speaking with an excision specialist to explore your options. At the very least, a pelvic floor physical therapist can teach you techniques to manage and relax the pelvic floor muscles that may be contributing to your pain.
“Through pelvic floor physical therapy, the muscles, and their response to pain, can be changed,” said Jeffcoat. “While addressing the muscle, fascia, and scar restrictions are only a piece of the puzzle to having pain-free sex, it’s important to address at some point in the journey as a major contributing factor.”
