Well, it's been a year.
This is my second try, writing it all down. I just trashed a 2-page draft that detailed the whole thing from start to finish, although there wasn't really a start, no moment when it hit me that something was wrong. People are so resilient that even when things aren't going the way they're supposed to we rationalize, one little weird moment after another until they've piled up and you realize you can't put off going to a doctor any longer. Even when you've had an upset stomach...for a year. Even when the pain you're only supposed to get one week a month slowly creeps, one day at a time, into every single day. Even when the pain stops you mid-sentence, a short, stabbing shot, or sometimes a long, excruciating pull on your nerves, stretching them like taffy from your back all the way down to your legs, buckling under you in the middle of your kitchen. It's only then that it occurs to you that maybe you should get your ass to a doctor. (Although my hippie parents used to stuff garlic and leaves in my ears to cure ear infections instead of taking me to a doctor, so maybe this is just me.)
In the past two years I have: 1) Had two IUDs removed due to ongoing pain (the second one I begged a poor nurse to take out, even though she'd never done it before, and she took one look at my face and did it, God bless her) 2) Been told each time they were inserted that it was "just a pinch," and I could take an ibuprofen if I was gonna be a lil' bitch about it 3) Tried two other forms of hormones both of which made me so sick I couldn't eat 4) Almost blacked out on the subway from pain 5) Been told by 3 doctors and a med student that I have endometriosis 6) Been told by my gynecologist that I don't have endometriosis 7) Worked from home, on average, 3 days a week due to the pain 8) Taken a lot of photos from my living room and tried to make my life still seem interesting on Instagram 9) Had entire conversations with my dog 10) Gotten two different ultrasounds, a battery of blood tests, and an x-ray, and had them all come back negative 11) Had so many hormones surging through my veins that I sobbed six times in one hour for no reason 12) Seriously contemplated what it would mean to not be able to have children 13) Sobbed six times in one hour for that very good reason 14) Seen how my friends' lives are who have children and considered moving up the timeline of my potential total hysterectomy to avoid that mess 15) Sat down at parties without telling my friends it's because I physically can't stand up anymore 16) Gotten a transvaginal ultrasound with my husband in the room, and joked with him that this probably wasn't how he pictured his first threesome going 17) Wondered if I was crazy 18) Been positive I was crazy 19) Considered whether it might be a relief to...not to die, exactly, but maybe just to wink out of existence. Get some peace.
It's pretty clear by now that I have endometriosis, which is what happens when the tissue in your uterus grows elsewhere. This gets worse when you have a period, which is why the first round of treatment is hormonal birth control with higher doses of estrogen, which make you cry uncontrollably when you find moldy bread in your cupboard (happened to me last week). The last resort is a total hysterectomy. There's some stuff in between, but it's all pretty grim. The pain varies dramatically from person to person, and the only way to get a diagnosis is by having laparoscopic surgery, going under and having a camera inserted through your abdomen. There are no visible indicators except for the insane bloating and acne that brings back terrible war flashbacks to middle school picture day. Endometriosis can cause infertility, either medically or by making you so angry with all this bullshit that your husband only occasionally, timidly approaches you, like a feral cat. There is no pain medication to treat you, because the only stuff that actually touches the pain is either illegal or making headlines.
And just as bad as the pain, and the fear of what it means long-term, is the isolation. People don't really understand what's going on with you because it's not like you have cancer or something, and people tend to scatter when you mention your uterus. I've had plenty of weeks where I've only left the house a handful of times, bailed on parties, bailed on walks with my husband and our dog, tried to explain at length to my mother why I can't sit in a bouncy car on a back road to stand on a farm and pet horses (that one really got to her; she's very into the horse). I've tried insanely hard to keep the pain from showing, making sure I'm walking normally at work, or keeping a smile up when a bolt shoots down my back. Only my close friends know, but I keep expecting everyone else to read my mind and baby me, and then when they don't, I get really hurt, because my barometer for normal human expectations isn't calibrated correctly anymore. It is legitimately crazy-making, and this is pre-hormone cocktail. On top of all this, my husband is in the hardest year of medical school, working 100 hours a week, waking up at 4am, studying until he goes to bed, putting his finger in so many butts, you guys. We both agreed we wouldn't switch life problems with the other one, and I change my mind daily about who has it worst.
And yet. There's so much little kindness when your world slows down and focuses in. I've spent hundreds of hours with my dog, who is the most incredible form of therapy I could hope to get. I've seen thousands of birds at the feeder on my back window, and I've watched them for hours and just marveled at how stupid the doves are. My boss has been absolutely angelic, letting me take any and all time I need at home, as long as things still get done (which I desperately need because oh God the boredom). Going through all of this together has given Tom and I a sort of battle-weary, tender companionship, where we swap taking care of each other depending on which of us is having the worst current crisis. We're in an endless three-legged-race, dragging each other forward and holding each other up, so unbelievably tired, but still making it, still a team. All he's wanted this Christmas is to go to Dollywood, because he's perfect, and I realized today that I might not be able to do the rollercoasters these days. I feel horrible about it, and he just responded that if I couldn't do it and we had a quiet day together, he'd love that, too. That's the real deal.
It's been 9 months since I wrote anything for myself. The last time I wrote, I talked about my eating disorder, and now I'm talking about my uterus disorder. It's kind of a downer, I know. And trust me, nothing is healthier for your eating disorder than willpowering through nine months of slowing-to-nonexistent physical activity coupled with constant, ready access to Nutella. But I wanted to write about it because of the experience I've had being a woman in pain, trying to get answers. In the last 3 months I've have had 10 doctors' appointments, 4 rounds of testing, countless calls and messages with doctors, and multiple physical therapy appointments, and I still don't have an official diagnosis from my gynecologist. Medical understanding of endometriosis isn't actually too clear to begin with, and the ultrasound that sometimes shows evidence came back negative for me. I have outright asked three separate doctors what to do about the pain, and all three of them have told me that they can't prescribe anything that will help with this specific type of pain, but that they won't judge me if I use the state medical marijuana program. I have cried on the exam table after getting another negative test from my gyno. My primary care doctor has called me on multiple Saturdays just to check in and let me know she's thinking about me. The pain is real. It's irrefutable. It's ruining my life. And I still don't have a diagnosis.
This is not an uncommon phenomenon for women in pain, particularly reproductive pain. Countless articles have been written regarding the disparity in pain treatment for women, particularly women of color (which I am not). In the last decade, the NIH research proposals least likely to get funding were those containing the words "ovary," "fertility," and "reproductive." Doctors, male and female, are more likely to dismiss women's concerns about pain as overblown, and we all know the word "hysteria" and "hysterectomy" have the same origin. Being in pain is hard. Being a woman in pain, with the stigma and the fear that her girly hormones are blowing things out of proportion...it's borderline fucking impossible. So I wanted to write about it, not just to get it off my chest, but also to tell you that I, a certified Strong Woman and pain in the ass, have had to fight tooth and nail to be taken seriously. Six months ago, I Googled "endometriosis symptoms" and realized I had every single symptom. I've Googled it countless times since, just to make sure I didn't miss anything, because I still don't have answers from the one doctor whose opinion matters the most.
So if this is you, or someone you love, you are not crazy. The way you feel is real. You are not weak, or hysterical, or pathetic (all things I've called myself repeatedly this past year). The fact that you can bear this pain and keep living makes you so much stronger than you thought. This Thanksgiving, I told my grandparents what I'd been going through and my grandmother immediately said, "I had it, too." She told me her story, and for the first time since the pain started, I felt a little less alone.
I hope that maybe now you do, too.
T.
In the past two years I have: 1) Had two IUDs removed due to ongoing pain (the second one I begged a poor nurse to take out, even though she'd never done it before, and she took one look at my face and did it, God bless her) 2) Been told each time they were inserted that it was "just a pinch," and I could take an ibuprofen if I was gonna be a lil' bitch about it 3) Tried two other forms of hormones both of which made me so sick I couldn't eat 4) Almost blacked out on the subway from pain 5) Been told by 3 doctors and a med student that I have endometriosis 6) Been told by my gynecologist that I don't have endometriosis 7) Worked from home, on average, 3 days a week due to the pain 8) Taken a lot of photos from my living room and tried to make my life still seem interesting on Instagram 9) Had entire conversations with my dog 10) Gotten two different ultrasounds, a battery of blood tests, and an x-ray, and had them all come back negative 11) Had so many hormones surging through my veins that I sobbed six times in one hour for no reason 12) Seriously contemplated what it would mean to not be able to have children 13) Sobbed six times in one hour for that very good reason 14) Seen how my friends' lives are who have children and considered moving up the timeline of my potential total hysterectomy to avoid that mess 15) Sat down at parties without telling my friends it's because I physically can't stand up anymore 16) Gotten a transvaginal ultrasound with my husband in the room, and joked with him that this probably wasn't how he pictured his first threesome going 17) Wondered if I was crazy 18) Been positive I was crazy 19) Considered whether it might be a relief to...not to die, exactly, but maybe just to wink out of existence. Get some peace.
It's pretty clear by now that I have endometriosis, which is what happens when the tissue in your uterus grows elsewhere. This gets worse when you have a period, which is why the first round of treatment is hormonal birth control with higher doses of estrogen, which make you cry uncontrollably when you find moldy bread in your cupboard (happened to me last week). The last resort is a total hysterectomy. There's some stuff in between, but it's all pretty grim. The pain varies dramatically from person to person, and the only way to get a diagnosis is by having laparoscopic surgery, going under and having a camera inserted through your abdomen. There are no visible indicators except for the insane bloating and acne that brings back terrible war flashbacks to middle school picture day. Endometriosis can cause infertility, either medically or by making you so angry with all this bullshit that your husband only occasionally, timidly approaches you, like a feral cat. There is no pain medication to treat you, because the only stuff that actually touches the pain is either illegal or making headlines.
And just as bad as the pain, and the fear of what it means long-term, is the isolation. People don't really understand what's going on with you because it's not like you have cancer or something, and people tend to scatter when you mention your uterus. I've had plenty of weeks where I've only left the house a handful of times, bailed on parties, bailed on walks with my husband and our dog, tried to explain at length to my mother why I can't sit in a bouncy car on a back road to stand on a farm and pet horses (that one really got to her; she's very into the horse). I've tried insanely hard to keep the pain from showing, making sure I'm walking normally at work, or keeping a smile up when a bolt shoots down my back. Only my close friends know, but I keep expecting everyone else to read my mind and baby me, and then when they don't, I get really hurt, because my barometer for normal human expectations isn't calibrated correctly anymore. It is legitimately crazy-making, and this is pre-hormone cocktail. On top of all this, my husband is in the hardest year of medical school, working 100 hours a week, waking up at 4am, studying until he goes to bed, putting his finger in so many butts, you guys. We both agreed we wouldn't switch life problems with the other one, and I change my mind daily about who has it worst.
And yet. There's so much little kindness when your world slows down and focuses in. I've spent hundreds of hours with my dog, who is the most incredible form of therapy I could hope to get. I've seen thousands of birds at the feeder on my back window, and I've watched them for hours and just marveled at how stupid the doves are. My boss has been absolutely angelic, letting me take any and all time I need at home, as long as things still get done (which I desperately need because oh God the boredom). Going through all of this together has given Tom and I a sort of battle-weary, tender companionship, where we swap taking care of each other depending on which of us is having the worst current crisis. We're in an endless three-legged-race, dragging each other forward and holding each other up, so unbelievably tired, but still making it, still a team. All he's wanted this Christmas is to go to Dollywood, because he's perfect, and I realized today that I might not be able to do the rollercoasters these days. I feel horrible about it, and he just responded that if I couldn't do it and we had a quiet day together, he'd love that, too. That's the real deal.
It's been 9 months since I wrote anything for myself. The last time I wrote, I talked about my eating disorder, and now I'm talking about my uterus disorder. It's kind of a downer, I know. And trust me, nothing is healthier for your eating disorder than willpowering through nine months of slowing-to-nonexistent physical activity coupled with constant, ready access to Nutella. But I wanted to write about it because of the experience I've had being a woman in pain, trying to get answers. In the last 3 months I've have had 10 doctors' appointments, 4 rounds of testing, countless calls and messages with doctors, and multiple physical therapy appointments, and I still don't have an official diagnosis from my gynecologist. Medical understanding of endometriosis isn't actually too clear to begin with, and the ultrasound that sometimes shows evidence came back negative for me. I have outright asked three separate doctors what to do about the pain, and all three of them have told me that they can't prescribe anything that will help with this specific type of pain, but that they won't judge me if I use the state medical marijuana program. I have cried on the exam table after getting another negative test from my gyno. My primary care doctor has called me on multiple Saturdays just to check in and let me know she's thinking about me. The pain is real. It's irrefutable. It's ruining my life. And I still don't have a diagnosis.
This is not an uncommon phenomenon for women in pain, particularly reproductive pain. Countless articles have been written regarding the disparity in pain treatment for women, particularly women of color (which I am not). In the last decade, the NIH research proposals least likely to get funding were those containing the words "ovary," "fertility," and "reproductive." Doctors, male and female, are more likely to dismiss women's concerns about pain as overblown, and we all know the word "hysteria" and "hysterectomy" have the same origin. Being in pain is hard. Being a woman in pain, with the stigma and the fear that her girly hormones are blowing things out of proportion...it's borderline fucking impossible. So I wanted to write about it, not just to get it off my chest, but also to tell you that I, a certified Strong Woman and pain in the ass, have had to fight tooth and nail to be taken seriously. Six months ago, I Googled "endometriosis symptoms" and realized I had every single symptom. I've Googled it countless times since, just to make sure I didn't miss anything, because I still don't have answers from the one doctor whose opinion matters the most.
So if this is you, or someone you love, you are not crazy. The way you feel is real. You are not weak, or hysterical, or pathetic (all things I've called myself repeatedly this past year). The fact that you can bear this pain and keep living makes you so much stronger than you thought. This Thanksgiving, I told my grandparents what I'd been going through and my grandmother immediately said, "I had it, too." She told me her story, and for the first time since the pain started, I felt a little less alone.
I hope that maybe now you do, too.
T.
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