Chronically Crazy: Life With Endometriosis

Living with a chronic illness is one thing; dealing with the outside perceptions is another.

Having a chronic illness can make you feel crazy, partly because it takes quite a few trips to various doctors and specialists to figure out exactly what’s wrong. It’s also because you assume these three things during and after the diagnosis process.

1. You’re insane or an idiot.

The pain, cramping, headaches, and fatigue you experience are because you’re “not handling stress well.” You really just need a vacation more sleep. Maybe you could eat better. It’s probably lactose intolerance mixed with the fact that you ingest more sugar than any human should on any given day. You’ll be fine, you just need to do a little yoga to get back on track.

2. Your friends hate you.

You cancel things left and right at the beginning because you’re scared of leaving the house. You keep a heat pack in your purse at all times. It weighs five pounds and won’t make it through airport security because it’s made out of clay and resembles explosives. You eventually grow to assume everyone thinks you’re making up your illness to watch Netflix with the dog instead of having any kind of social life.

3. People think you’re dying.

After months of vague, “Oh, she’s sick,” and the high number of doctors appointments, people you barely even know think you have cancer or some sort of deadly disease. They heard it through the grapevine. They speak in hushed tones. Your life is full of said people yet they can’t exactly ask about your medical history. You don’t correct their assumptions. “Hi” is always followed by, “How are you feeling?” You sometimes feel like you might be dying.

I have stage 3.5 endometriosis. Or, as I like to explain in Layman’s terms, “Instead of shedding endometrial lining and blood externally every month, I bleed internally.” I also add in, “My organs are gluing themselves together with scar tissue and it f*cking hurts.” I switch up the terminology and gory details depending on how much I want to freak out the listener. If I’m bored I’ll just state, “My baby box is trying to kill me.”

In reality, my uterus is actually over-functioning. That bastard wants to have a baby so badly it will not stop going on about it.

Endometriosis Illustrated by Marcy Gooberman

Every month I used to have cramps so severe I couldn’t move. I assumed this was normal until I couldn’t work or even leave my bed. After several gynecologists and family practice doctors told me I’d be fine and there was nothing to worry about, I found a physician who believed me and knew what was going on.

She confirmed what my journalistic, Internet-researching self suspected: endometriosis. A two-hour surgery later and we knew the extent of the damage to my chaotic insides. The doc literally cut my bowel off my uterus. She cauterized scar tissue so my organs went back to their normal places and I went home with a diagnosis, a temporary anesthesia wobble and an incredibly sweet, concerned boyfriend chaperone.

That procedure was two years ago. The endo has lead to other issues which are considered chronic pain and allow me to keep the “spoonie” label us endosisters wear so well. A diagnosis of endo doesn’t typically unite a woman with her friends. Even though endometriosis affects as many as 176 million people worldwide, many girls don’t even know of the disease, let alone have pals who are in the same boat. I sure didn’t — I turned to the Internet for solace and guidance.

Private Facebook groups gave me some insight into what others with the disease are dealing with. While I have it bad (I’m a 3.5 and 4 is the worst), this is nothing. There are women on disability because of endo. They’ve gone through multiple surgeries, medically-induced menopause (been there, hot flashed through that), infertility treatments, acupuncture, holistic medicine and more with no relief. I am lucky. A particular brand of birth control, when taken in a timely fashion and without placebos, keeps my sticky insides in check.

As of today, endo has no cure. And that means this spoonie will forever feel those first three assumptions: I am crazy. My friends hate me. People think I’m dying. Some days I am in pain, my stomach and lower back bare burn marks from repeated daily use of too-hot heat packs. Others I am a normally functioning human being.

To me, asking what’s going on shows you care. Or you could be a snoop. Either way, not speaking up with a question as bold as, “Why don’t you hang out with us anymore?” Or, “You haven’t been at a show lately…. Are you OK?” is much more painful than not saying a word. You’re feeding those assumptions and making me want to stay with the dog to watch Netflix after all.

Must be looooooove on the braaaaain 🧠. Or was that s£x? 👀🤭 Our brains are our largest s£x organs and sometimes they get a little sad, hyperactive, anxious, or overwhelmed. You won’t always be in the mood for s£x and that’s okay! Keep communication with your partner open and ongoing, check in with yourself and your mental health, and lean on the support of a trusted therapist or doctor if you need some extra guidance. 🫶🏽 Anything you would add?

I mean 😏

It is not wrong nor should it feel shameful to ✨seek pleasure.✨ I think those of us who grew up more religious were taught that you should always be in service of others and giving of yourself rather than concerned with our own needs or passions. While it is wonderful to be generous with giving (and can in fact be a source of pleasure), it should be equally encouraged to pursue your own pleasure — it whatever form it may take! It may feel self-indulgent, but why is that a bad thing? Pleasure boosts our mental health. It helps us cope with a difficult world, with anxiety, depression, and stress. It makes us feel good! It gives us something to look forward to. Pleasure helps us connect with others and with ourselves. Pleasure (as long as it is not at the expense of someone else’s safety or well-being) should be a priority, for our joy and for our health. It really is so important! Where do you find pleasure? I personally love a good massage… 💆🏽‍♀️

It’s time for a talk, friend. Let’s be clear, you nor your partner ever has to do *anything* you’re not comfortable with. That said, if it’s something you enjoy and that’s pleasurable to you, it’s okay to ask your partner for it! They can say no, but if they invalidate your pleasure, much less expect you to do something they won’t do?? The ball is then in your court to decide if this is the partner for you. You deserve someone who cares about and prioritizes your pleasure. Who is thrilled to be acquainted with your body, all of it! S-x can be vulnerable to talk about, but when you do…it’s so much better. 👅 included. Ask your partner what their hesitations are and have a *conversation.* Maybe they’re nervous, intimidated, or struggling with shame. Maybe they’re down to try other things you would enjoy and build up to it. The point is, it shouldn’t just be automatically dismissed. You can decide what’s right for you and what makes you feel aroused, validated, and appreciated. Whatever you do, don’t internalize their rejection. Your body is beautiful, desirable, and definitely worthy of pleasure. 😋🥰

A UK study published in the International Urogynecology Journal found that only 46% of participants correctly identified that a female has 3 holes in the external genitalia. 😬 Not great. We’re taught so desperately little about our bodies and so discouraged from exploring them that we don’t even know what we’ve got going on down there! Understanding your own anatomy (and getting educated on your partner’s anatomy) can boost pleasure 1000x!! So take a mirror, use your hands, and get comfy exploring! 🪞🕵🏽‍♀️ And if you really want to get informed (and inspired 😉), head to our website for our basics on pleasure and anatomy. What do you think? Could YOU correctly label a diagram of what lies beneath?

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