My Endometriosis Story: Overcoming Pelvic Pain (Plus an Action Plan for Treatment)
March was Endometriosis Awareness Month. I’m writing this in April because I just wouldn’t be myself if I weren’t tardy for the party. But who knows, by the time you read this, it could be March again and I’ll be right on time.
My Endo Story
“Mom, the baby’s coming,” I screeched across the room.
“Girl, have you lost your mind?” she asked me. Because, of course, there is no baby. I’d have to have lost my mind to entertain the idea that the source of my pain was a fetus and not my endometriosis. But in the midst of that pain, white-hot and searing, I probably had.
Let’s back up a bit.
In college, I started to sense that something about my period was off. My periods were a bit too heavy. I had more severe cramps than my friends. I couldn’t seem to avoid leaks no matter what I did. Later, throughout my twenties, those problems intensified. One sweltering day in May several years ago, a friend and I decided to slip away to the ocean for the weekend. I was menstruating and bleeding heavily but I was determined to persevere. So in my friend’s new white Civic, we took off. By the time we arrived two hours later, a sense of dread had fallen over me. I was bleeding so heavily that I couldn’t be sure that I wasn’t leaking. Surely, I couldn’t have a repeat performance of every girl’s middle school nightmare at age 25. Twenty-fucking-five. But when I got out of the seat, disaster struck. On the car’s cream-colored cloth seat was my shame in bright red.
Embarrassing leaks aside though, chronic pelvic pain is really what motivated me to seek a diagnosis and treatment. That’s because, like the great Illana Glazer, I’m a cum queen. I just love to cum. Being orgasmic is one of the great joys of my life; a lazy afternoon in bed with a vibrator or two leaves my spirit feeling renewed. To me, a masturbation session feels less like a diversion and more like self-care. That orgasmic rush of dopamine and oxytocin is like medicine that I’ve come to rely upon.
And so I was devastated when the cramping and pelvic pain I’d experienced during my period appeared during other times in my cycle. Suddenly, a dull ache accompanied penetration. Sometimes I’d feel a sharp stabbing pain in my pelvis when I orgasmed. I could deal with severe cramps during my period but pain during orgasm is not something I could abide. Newly resolute, I made an appointment with my gyno and explained my concerns. Together, we worked on a treatment plan that combines hormonal contraception, pain medications, and topical pain relief.
Honestly, pelvic pain is still a part of my life. Sometimes, when just doing my nails or working or sitting around, I’ll feel painful contractions as though I’m in labor followed by spotting (see above). But I’ve learned strategies to deal with it head-on:
- Check in with my doctor so we can monitor my condition. Knowing what’s up with your body is the first step.
- Communicate with partners about my pelvic pain and how it affects my sexual wants and needs. Never stop advocating for your own pleasure. If you’re hurting, speak up.
- Eat a diet full of anti-inflammatory fruits and vegetables. It works for me but even if it doesn’t lessen your pain, a nutrient-rich diet can only do good things for your health.
- Take an NSAID like ibuprofen 30 minutes before penetration to stave off potential pain.
What To Do If You’re Suffering: A Treatment Action Plan
If you have endometriosis, your endometrial (uterine cells) grow abnormally outside of your uterus. Endometriosis signs and symptoms include:
- Breakthrough bleeding (spotting)
- Pelvic pain during penetration
- Heavy bleeding (soaking one or more pads/tampons every hour)
- Severe pain that interferes with everyday activities
- Cramping when you’re not getting your period
- Chest pain (rare- an indication of endometrial cell growth on the diaphragm)
If you suspect you may have endometriosis but haven’t been diagnosed:
Make three initial appointments: Schedule a pelvic exam, an STI screening, and a laparoscopy.
- Regular pelvic exams are the cornerstone of reproductive health. If it’s been a minute since you’ve had one, that’s where you should start your treatment journey. Your healthcare practitioner should screen you for pelvic inflammatory disease and vaginismus, two common causes of pelvic pain.
- Next, request an STI screening. It will help you rule out infections like gonorrhea and chlamydia that sometimes cause pelvic pain.
- Finally, a laparoscopy will allow a doctor to make a definitive endometriosis diagnosis. They’ll make small incisions in your belly to look for endometrial cell growth outside of the uterus where they belong. These cells may grow on one’s ovaries, fallopian tubes, abdominal cavity or diaphragm. While laparoscopy is a surgical procedure, it is considered minimally invasive and is necessary for diagnosis.
If you’ve been diagnosed and you’re wondering what to do next:
- Find a doctor who takes your concerns seriously and is up-to-date with the latest endometriosis research. If you don’t feel respected or listened to, find a provider who can meet your needs.
- Try oral contraceptives first. They’ll halt ovulation and reduce the growth of endometrial cells.
- Evaluate your progress on contraceptives for 3-6 months. Combat residual pelvic pain with oral and topical analgesics.
- Don’t be afraid to have surgery if contraceptives aren’t working for you or you’re experiencing unacceptable side effects. Most surgical options are minimally invasive and require very little downtime.
- The most severe cases may require a radical hysterectomy for relief. Doctors may try to talk you out of having a hysterectomy if you are of childbearing age. But if you’ve made up your mind, stand your ground. You’re going to have to be your own advocate.
The Endometriosis Association: Since 1980, The Endometriosis Association have provided support for those struggling with the physically and emotionally painful effects of endometriosis. They’ve published three books about Endometriosis and were instrumental in the development of a research facility to study endometriosis at Vanderbilt University. You can access the association’s many resources here or make a donation to support their advocacy.
Planned Parenthood of America: If you’re uninsured and need a pelvic exam, Planned Parenthood is the best placed to start. They use a sliding scale for payment to make care affordable for all. If you are insured but you’re having trouble finding suitable care, Planned Parenthood accepts most major insurance plans. You can find your local Planned Parenthood and book an appointment here.