💛 I AM ONE IN TEN. 💛

I’ve been taking a blog break for a while. Life happens, you know? After an intended break at the beginning of January, health and job search developments pushed back my return further.

But guess what? March is Endometriosis Awareness Month. 💛 The timing is just right for me to share that I’m having surgery on April 1.

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First, let’s cover some important points:

💝”Ew, do we have to talk about periods?” 💝

It’s 2021. Get over yourself.

💝 “What is endometriosis?” 💝

The tissue that lines the uterus is called the endometrium. Endometriosis occurs when that tissue grows where it shouldn’t. The exterior of the uterus, the fallopian tubes, the ovaries, even non-reproductive organs like the bladder or bowels can have these tissue growths.

💝 “How does endometriosis affect patients?” 💝

Endometriosis is often incredibly painful. Every cycle, when the uterus sloughs off the normal endometrium (a period), all the endometrial tissue bleeds. This leads to blood in the abdominal cavity and other organs that has nowhere to go. The inflammation then causes intense pain.

This pain affects our day-to-day life. We miss school, work, and social events. We can bleed through tampons and pads at an alarming rate, causing anemia for some. We can fall behind academically, fail classes, or lose jobs.

Endometriosis can make it difficult or impossible to have biological children. It can make sex painful. Growing on the bowels or bladder can affect urination and bowel function. Chronic pain can cause anxiety, headaches, fatigue, “brain fog,” and other symptoms deterring normal brain or body function.

💝 “How is endometriosis treated?” 💝 (Warning: sass ahead)

There’s a lot of options, and most of them suck. Also, insurance makes you try a bunch before paying for the others, so these are in the order we’re usually required to try them.

We start with over-the-counter painkillers (Midol, Motrin, Advil, Tylenol). On their own, they’re pretty much never enough. Combined with heating pads and all the “lifestyle changes” (diet, exercise, hot baths) they’re still not enough, not for the decades of periods ahead.

Birth control pills come with hormonal side effects like intermittent unpredictable bleeding, headaches, weight gain, acne, and others. These can be less effective if you’re on any other medications. Oh, also, they can make symptoms worse. You never know until you try! And there’s dozens of these to try, along with similar treatment in vaginal rings, patches, etc.

We have various hormonal shots, that come with similar potential side effects, except worse, and take 3-6 months to wear off.

Some hormonal medication induces a fake menopause. These are generally known to be terrible, to be avoided at all costs, and often demanded to be tried anyway by insurance before they’ll pay for anything else.

One new drug on the market is Orilissa, made for endometriosis pain. It comes with warnings of depression, suicidal ideation, menopausal symptoms, and oh yeah! Don’t take it for more than six months (high dose) or two years (low dose) or you’ll risk severe bone loss and fractures. (Source 1. See sources linked at the end.)

Most of us eventually end up in the same place: surgery. Tissue can be burned, removed, or vaporized (sounds cooler than it is). These surgeries usually only help if your doctor gets all the tissue, which can be tricky. They take weeks or even months of recovery time, and don’t promise permanent relief. “62% of women with endometriosis had further surgery, with a median time of less than two years to a second surgical procedure. Half of all women with endometriosis had undergone repeat surgery within 5.5 years…” (Source 2.)

The technically “last resort” surgery is a hysterectomy, which one in five (aka half of all) patients eventually get. This surgery removes the uterus. (Patients can never carry a pregnancy; this surgery is irreversible.) You can get the ovaries removed, too. If you do, you’ll instantly enter surgical menopause, and possibly need hormonal replacement therapy (plus risk heart and bone problems). If you don’t get the ovaries removed, there’s a chance the endometriosis will still grow back anyway. One study found, “A high recurrence rate of 62% is reported in advanced stages of endometriosis in which the ovaries were conserved. Ovarian conservation carries a 6 fold risk of recurrent pain and 8 folds risk of reoperation.” (Source 3.) This surgery costs a boatload and takes several months to full recovery.

The worst part of this entire process is how little control we have over our own lives. No matter what patients have to say about side effects, miserable experiences, or their own desires and needs, insurance still requires us to undergo multiple birth control options before getting more conservative surgeries, and to try those conservative surgeries before approving coverage of hysterectomy. The only stories I’ve heard of patients experiencing permanent relief have come from complete hysterectomies with bilateral salpingo-oopherectomies (removing the uterus, cervix, tubes, and ovaries all in one), but if you’re unmarried, under 35, and/or don’t have any children, it’s almost impossible to get that procedure approved. If there’s any chance you can theoretically still have children, the system forces you to preserve fertility at the cost of quality of life.

💝 “Why does awareness matter?” 💝

Endometriosis has no cure. It affects one in ten people with periods/uteruses worldwide. As I said above, it leads to terrible pain, academic troubles, lost jobs, and infertility. And the treatment currently available sucks, even when you can afford to pay for it and take time off work.

Research on gynecological health concerns across the board has historically not be prioritized or funded. In 2021 and beyond, we need that to change. Raising awareness of the existence, impact, and prevalence of endometriosis will eventually make the lives of people like me, my relatives, and my friends better.

💝 “What can I do?” 💝

Start by sharing this post, please. Knowing we have a problem is the first step to solving it.

But don’t stop there. Normalize talking about periods and reproductive conditions. Show compassion and support to your co-workers, friends, family members, and peers experiencing chronic pain or gynecological disorders.

And, of course, donate. If you have the money and desire to help, please donate to The Endometriosis Foundation of America (www.endofound.org). They’re a independent nonprofit founded by woman of color and celebrity Padma Lakshmi, who has endometriosis herself, and renowned laparoscopic surgeon Dr. Tamer Seckin. (See link below for more information.)

💝 With awareness, compassion, and funding, we can find hope. Maybe, with enough effort, we can even find a cure. 💝

Tune in this weekend to hear my personal story of endometriosis, and more information about my upcoming surgery.

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Source 1: https://www.medicalnewstoday.com/articles/326072#dosage

Source 2: https://www.rcog.org.uk/en/news/over-60-of-women-diagnosed-with-endometriosis-go-on-to-have-multiple-surgical-procedures/

Source 3: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286861/

More about the Endometriosis Foundation of America: https://www.charitycharge.com/spotlight-endometriosis-foundation-of-america/