A year and half ago I went in for a surgery that I was hoping would give me a lot of answers. When I began to wake up the doctor informed me that I had endometriosis that had spread throughout my organs. It was “deeply infiltrative endometriosis” or DIE, which is what I had felt like was happening to me before surgery. There was so much relief that I felt to know they found something and I wasn’t crazy or it wasn’t just in my head.

You see, endo can almost only be confirmed by getting surgery. Some people get the surgery to find nothing and have to go back to the drawing board. Some don’t make it to surgery because they have overdosed on pain pills waiting for a doctor to believe their pain. The way endometriosis showed up for me was different than what I had found sweeping google or even my own education through sex therapy school. I had the traditional, bad periods, lower back pain, nausea, painful sex types of challenges but it was beyond the traditional symptoms. I quite literally thought I was dying.

The World Health Organization describes endometriosis as a disease in which tissue similar to the lining of the uterus (the endometrium) grows outside of the uterus. When this growth happens the tissue creates chronic inflammation and scar tissue forming usually in the pelvic floor area but can spread throughout the body.

Endometriosis can lead to painful sex, pain when urinating or having a bowel movement, chronic pelvic pain, heavy bleeding, trouble getting pregnant, bloating, nausea, fatigue, depression and anxiety.

“Endometriosis has significant social, public health and economic implications. It can decrease quality of life due to severe pain, fatigue, depression, anxiety and infertility. Some individuals with endometriosis experience debilitating pain that prevents them from going to work or school. Painful sex due to endometriosis can lead to interruption or avoidance of intercourse and affect the sexual health of affected individuals and their partners. Addressing endometriosis will empower those affected by it by supporting their human right to the highest standard of sexual and reproductive health, quality of life and overall well-being.” World Health Organization

I went from being a very active, physically competitive person through different sports to sleeping 18-20 hours a day. I was constantly sick for years, my body was constantly swollen, I was in so much pain with nothing to relieve it. My body was changing rapidly to the point that I was having to buy new clothes on a monthly basis, and then just tried making my own clothes because it was getting expensive to buy a new wardrobe every 30 days.

I wasn’t able to show up to work or with friends. I canceled on everyone, all the time because the one day out of the month that I felt hopeful, I would schedule a bunch of meetings and then need to cancel due to getting sick…again. Last year I was sick 281 days out of 365. This year I have been sick 46 days out of the 57 days. The thing with endo is that your partner becomes more of a caretaker than a partner at times. The thing with endo is that when you get surgery to remove it, it comes back. The thing with endo is that it can impact your immune system, your quality of life. It can attack other organs which creates a fun host of new problems. It’s a chronic illness.

The thing with endo is that women weren’t a part of research until the 80s and we are still trying to understand endometriosis. Yet, it impacts 1 in 10 women or vulva owners. It takes on average 10 years to get diagnosed. There is no cure at this time. However, there are hormonal medications that can help with pain reduction. There are other evidence-based approaches such as mindfulness practices, yoga, physical therapy, sex and relationship therapy that help in reducing endo symptoms and living with endometriosis.

One of the most important pieces you can do for yourself is finding a healthcare provider who believes your pain, your symptoms and wants to help advocate for your situation. I was going to one of the best sex medicine practices in the nation who fought for me and knew when I needed a higher level of care like sending me to Cleveland Clinic.

March is Endometriosis Awareness Month. We are here to help you get the answers you need and deserve to fight for yourself and your health.

If you need help finding someone in your area, please reach out.