In a desire to deal with my loneliness and feeling disconnected from the world, I joined several groups on Facebook, associated with personal things I was dealing with. I made sure they were closed groups, so my friends and family couldn't see that I was a part of them. I even did a Google search to make sure groups set as "closed" were indeed hidden from information my connections could view. Did I mention I'm pretty closed off?
Joining the various groups was my first step in feeling like a person again. Actively joining a community, albeit online, and committing to at least attempting to be active and engage socially with others. That, for me, is intensely difficult.
What I found though, was a sense of community I haven't felt in a long time. I've made friends, "met" other women who understand me, and don't judge me. It's a safe zone, for sure, but it became addicting, and fun, to be social and feel that fear dissolving every time I had a positive encounter. There were a few negative ones, but I didn't let them stop me, and for me, that is major growth. A year ago, a negative reaction to an encounter, even online, would put me off for a week, and make me avoid any human contact outside my home for quite a while. Social phobias suck.
Those phobias, however, are a different story. Today, in this post, I'm going to open up about something I think may end up benefiting others, hopefully. Endometriosis.
I sincerely hope you've heard or read that word at some point in the last few weeks. March is Endometriosis Awareness Month, and it's been insanely successful this year, from what I can tell.
In case you've been sheltered somehow from the awareness raising campaigns, or simply haven't looked more into what that big mind-numbing word means, let me run through it really quickly, with a cliff-notes explanation. Sciency types, don't jump on me if it's not technical or perfect - I'm writing it as if I'm explaining it to my little brother, who has no clue about any of this stuff, and has a difficult time paying attention. If he can get it, hopefully anyone can. ;)
Anatomy warning - put your science/mature brain on here, so you can understand, because more than likely, you know a woman with this condition, and she would want you to understand what she's going through. Trust me.
The cycle of a woman's period is all about the uterus shedding it's interior lining every month (or around 28 days for a healthy cycle), if there isn't a pregnancy. Gross, but that's what happens, what can you do. The bleeding week-ish portion is the actual get-rid-of-it lining, and a fresh lining takes it's place, freshly prepped for the possibility of a pregnancy.
What does that have to do with endometriosis (endo, for short)? The tissue that lines the inside of the uterus, and bleeds every month, is specific tissue. It cycles through layers based on hormonal cues, basically estrogen. For a woman with endo, that tissue grows outside the uterus, and works exactly the same. Namely, it bleeds every cycle, typically into the pelvic area. Outside the organ it was meant to be contained inside.
Obviously, that results in basically internal bleeding every period, with no where for the blood to escape. The trapped blood then causes damage as it sits and festers, causing pain that you would imagine would go with internal bleeding, and over time, causes scaring. That scar tissue can attach to any muscle, organ, ligament, or nerve around, and can cause massive damage.
It's also a progressive condition, meaning it gets worse with time. The only way to get rid of it, is to cut the bleeding lesions out, cutting deep enough to get the roots, and even then, it can and most often times does grow back. Even removing the ovaries/uterus doesn't stop it, because it grows it's own estrogen! Basically, it's a bad ass pissed off kind of cell structure that we can't actually stop, and at best, only hack up the woman suffering from it, and hope it's a while before the lesions grow back. It's a war, and currently, one we are losing.
There are 4 stages of this condition, 1-4. Stage 1, as you may have guessed, is the "best" case scenario. Generally, women with stage 1 can cope okay, still get pregnant fairly easily, and can stay out of the hospital. Stage 2 is a bit worse, but from what I've seen, fairly manageable for the most part. Stage 3 gets quite a bit worse, and it's pretty bad, with infertility issues, hospital visits, and massive pain. Stage 4 is living hell, for most, with terrible infertility, massive pain that even morphine can't stop, and by this point, typically travels to other organs, putting them in risk of being damaged and needing to be removed. Try having a bleeding lesion on your bladder - it's like the never ending uti from hell that will never, ever heal, without massive surgery, and will most likely come back.
Women can get these lesions any where in the body, on any organ, including the brain, eyeballs, lymph-nodes, etc. It attacks the body from the inside out, and once it spreads that far, the best any doctor can do is attempt to clean up the damage without making it worse. It is living hell.
If a woman tells you her period is so bad she blacks out, can't walk, can't move, don't dismiss it. She's not okay, and there is something wrong. A healthy period is uncomfortable, and cramping can hurt, but if one pain pill doesn't fix it, then something is not right. Catching it early can save a woman from a lifetime of damaged organs, pain, and internal havoc physically, mentally, and emotionally. Since it's dismissed so often, a lot of women end up committing suicide because of it - being in that level of pain for so long does bad things to the mind, and being dismissed or told she's "weak" may just kill her spirit, and eventually, the woman herself.
Personally, I have stage 4 endometriosis. I also have pcos, so I don't just get monthly periods, I typically get them bi-weekly, if not back to back. The mix would mean that sometimes, I would go months without relief, pain bad enough to make me pass out, lose sleep for days, and cry until I physically couldn't cry any longer. I was dismissed, told I was weak or seeking attention, and wanted to die. I tried to commit suicide twice because of the pain.
Endometriosis isn't a joke. It's not an excuse. It's not convenient. A woman with internally bleeding lesions isn't a person trying to get attention. Passing out from pain isn't a joke. If you saw someone in so much pain they passed out - broke a bone, for example - would you dismiss them and tell them to toughen up? No, unless you're a psychopath. Endometriosis is no different. I have yet to meet a woman with it who is glad to have it, or would wish it on their worst enemy. It can be crippling, and often times, is.
I want to repeat my main point - you probably know a woman with endo. Why? Because 1 in 10 women have endometriosis!! Think of 10 women you know - your mom, sister, cousin, aunt, grandmother, girl friend, friend, nerdy chick you cheated off in math, or the barista at the local coffee shop. Chances are, one of them is living with endo, and you probably didn't even know it. She could be bleeding internally right this second, slapping a smile on her face so you don't have to know about it.
Last points - endo isn't contagious, you can't contract it (not a disease), it's been found in miscarried fetuses (aka, a baby is literally born with it), there is no cure, a hysterectomy and birth control won't stop it, there is no stopping it, children can have it even before they start their period at all, it can effect men in rare cases, and it's not a joke.
If this post does anything, I hope it helps you become more aware. If this was taken more seriously, and the women suffering had support, maybe we could find a cure. More and more studies are being done because more and more women are saying "enough is enough" and demanding help. We aren't demanding attention for ourselves, simply this awful condition that shouldn't even exist.
The women in your life suffering with endo deserve to live without crippling pain. Women of the future deserve to live without crippling pain. With any luck, years from now, "endometriosis" will be an obscure term in a medical collection of conditions that have been cured and erased from our species.
I'm not looking for sympathy, attention, or a pat on the back. I'm sharing my story because I've decided to stand up, and say please, don't dismiss this. I don't want anyone to have to suffer with internal bleeding, chronic pain, infertility, and constant ER visits, all while having others roll their eyes and be disrespectful. It's not fair. It's not right. Human suffering isn't something to roll your eyes at, regardless of who is suffering, or whether it has to do with a period or not. Let's do something to change this. If nothing else, listen to the women in your life who say they have it, and are suffering. Just give them a hug, is that so hard? I'm sure you'd want one, if you started bleeding internally, that's for sure.
Thanks for reading - hopefully the ripples are good ones.
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