Coming to Terms with Endometriosis

I have endometriosis. Or so I’m told. I guess we’ll have absolute certainty on that when I have surgery later this summer, since surgery is the only official way to diagnosis it. But it’s gotten bad enough for the lesions to show up on CT scans and MRIs, so my doc says that’s pretty definitive. Actually, our conversation after my MRI basically went like this:

Doctor: It’s endometriosis.

Me: What else could it be?

Doctor: It’s endometriosis.

Very much like that scene in Friends when Joey has kidney stones.

It shouldn’t have been a surprise. Endometriosis (or Endo as the cool kids call it) has been suggested to me before, but I didn’t want to have surgery to find out if that was the cause of my pain. It’s gotten bad enough that surgery is no longer an option. I want to come to terms with this but mostly I’m stuck at “endometriosis sucks.”

The Emotional Fallout

Honestly, I’m not in a great place. Mentally or emotionally. I’m surviving. I’m figuring it out. But it’s been rough. While I’m doing what I can, it’s hard to get out much when I feel so wretched. When I do go out, I spend a lot of energy on trying to hide my pain. Partly because I don’t want people to worry and partly because I don’t want to talk about it. I want a break from dealing with it. But dealing with it alone is hard, so I also want to talk about it. Catch-22.

Luckily, I have close friends who have been fabulously supportive. I love that when I got my MRI results, one friend took me on a hike through bluebells and another arranged a trip to a rage room. Therapy has also been a lifeline. While I usually turn to yoga and meditation, I’m even struggling with that, which–if you know me–is saying a lot.

I feel like me, but I don’t feel like me. I feel like the me I know is slipping away into this cloud of pain. It used to be that I had a “normal” baseline with islands of pain. Now, it’s becoming a painful baseline with islands of normal. It helps that we’re starting to get answers and figure out steps for treatment, but it still feels pretty overwhelming. Especially when the pain keeps me from doing the things I want to do.

Trying not to lose myself to the pain of endometriosis

Let’s Back Up. What is Endometriosis?

If you don’t know, endometriosis is a condition where cells similar to the lining of the uterus grow outside the uterus, mostly on the ovaries, fallopian tubes, and other pelvic tissue. It can also grow on organs, like your bladder, bowel, appendix, etc., and into the abdominal wall. The tissue acts like the lining of the uterus, thickening and bleeding each month, but there’s nowhere for the blood to go so it’s trapped in the abdomen. It irritates the organs causing inflammation and scar tissue.

If that sounds painful, it is. Endometriosis can also come with a wide range of awful symptoms, including GI issues that are causing me all kinds of trouble. I’m also very likely to be losing an ovary soon, since it’s at the center of my worst pain.

A Few Infuriating Facts

It’s estimated that 1 in 10 women have endometriosis. But the diagnosis is ridiculously hard and, on average, takes over seven years. I don’t remember when endo was first suggested to me, but it was at least 10 years ago.

Basically, there are two reasons endo is hard to diagnosis. One, it doesn’t show up on imaging until it’s progressed pretty far. Two, pain with periods and ovulation is normalized and dismissed. Oh, and let’s add a third reason: for most of history, doctors have been men and women’s health has been seriously overlooked.

My symptoms have gotten progressively worse over the last two years and it still took (another) trip to the ER earlier this year to start figuring this out. And that was only because the CT they did after an ovarian cyst rupture happened to catch something that warranted a closer look with an MRI. And they only did the CT because the ER doc misread the ultrasound. Serendipity?

Endometriosis Treatment

There are treatments for endometriosis… sort of. Unfortunately, I have a blood clotting disorder that limits my safe options. I also refuse to try some drugs because they include lovely side effects like early menopause, mood changes, and suicidal ideation or behavior. Depression and suicidal thoughts are already common in endo (in about 50% of patients according to a major study). I don’t need a drug adding to that.

I could say more about endo treatments, but I don’t have the mental capacity for that at the moment. It’s a labyrinth of pharmaceuticals, surgery, diet, exercise, acupuncture, meditation, yoga, and other wellness options. There’s not a lot of agreement on effective treatments. Or agreement on what symptoms are caused by endo. Or what causes endo in the first place. Etc. etc.

Insurance Insanity

Surgery will be part of my treatment, though prepping for that has been eye-opening. There are so many problems when it comes to endo care. For example, excision surgery is the gold standard but hardly any surgeons have the training to perform it and insurance often won’t cover it. Why cover the best medical option when there are cheaper options available? (/sarcasm)

I guess that’s expected in a country where insurance dictates healthcare, regardless of what a doctor says is best.

Here’s a fun example: I’ll have to take blood thinners after my surgery. My hematologist said she’ll try to get me pills but a lot of insurance companies only cover injections, so there’s a good chance I’ll be sticking a needle in my belly every day for two weeks while recovering from abdominal surgery. Not because that’s the best medical choice, but because my insurance might not want to pay for pills. (Are we great yet?)

Physical Therapy for Endometriosis

On a more positive note, physical therapy has been very helpful. When you go through years of near constant pain, your body starts guarding itself, bracing until it forgets how to relax. My pelvic floor, hip flexors, and back muscles have become a hypertonic mess. There’s also a lot of weakness because the pain makes it hard to stay active.

PT is teaching me how relax the uber-tense muscles and exercise them gently. It can only do so much to reduce the pain during flares, but it’s helped me find relief and rebuild some strength when the pain isn’t as bad. I also found a kick-ass cordless heating pad I can wear around my waist because heat is about the only thing that helps ease the pain.

What Else Can I Say…

I’ve debated whether to share about this publicly. That whole catch-22 I mentioned before. But despite endometriosis being fairly common, women tend to suffer in silence and I don’t want to do that. While I doubt I have anything new to add to the endo conversation, I know it helps me to read posts from other women who are going through the same thing. It can be nice to know I’m not alone… even if I wish no one had this bullshit disease.

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