Hello, dear friends.
If you have not guessed it, I am in pain. I’m always in pain to an extent, but every now and then the level is raised to such ridiculous levels that I feel like I may just burst. It reminds me of those thermometers in old cartoons that get so hot they shatter. I am currently that thing, and it is not a good feeling.
Most women have pain on their periods. Cramps, nausea, back aches, stomach pains, you name it. Some women, though, have worse periods than others. Lucky me, I am one of them.
I have actually never experienced abdominal cramps on my period. I got it my junior year of high school, when I was 16 years old, ironically, right after I just finished reading Stephen King’s book Carrie.From that day forward, instead of getting cramps, I got pain in my spine, swelling and bruising in my lower back, blood clotting, and horrific pain in my legs. I tell people it feels like my spine and legs are being twisted around like a wet towel, while at the same time being stabbed with knives. It gets so painful that I frequently fall or even black out entirely. It’s the main reason I nearly failed high school as well; twice I was given a court summons, and my mother had to go to court and tell them, “hey, my daughter isn’t a truant, she just can’t really walk or function once a month, sometimes more. So back off and let her go to school, asshats!” Okay. She may have not said it exactly that way, but something along those lines, I’m sure.
I have tried a number of different treatments and methods to control of this pain, and everything has failed. Birth controls, physical therapy, acupuncture,surgery, shots, and so on. Then, two years ago, I had several ultrasounds which discovered that I had ovarian cysts on both ovaries, as well as a tumor wrapped around my fallopian tube. I had a laproscopy, and the doctors swore that those were definitely the problem. Who wouldn’t think that? Sure enough, after the surgery which left two small scars on my tummy so that it now looks like a smilie face, I still suffered. Not even a little change. The OBGYN actually told me, “Well, it’s probably just normal then.” Uhm…excuse me? Pretty sure it isn’t normal to not be able to walk on my period, or you know, black out and hit my head on the bathtub. I’m not a doctor, but, I’m pretty sure. I was so incredibly angry at her, and when I disagreed with her she actually yelled at me and said that was all she could do. I currently have the urge to flip a table, so I’m probably still a bit angry about it. I just wonder how she could just try one surgery then give up. I’m baffled.
Next, I had cortisone shots in my spine, while still messing with my birth control dosages to try to see if any of that happened. I ended up not only getting no improvements from the cortisone shots, but I had an adverse reaction to it, which included a major fever, severe nausea, pain all over, and even hallucinations (but I’ll write a post about my hallucinations later, because that’s a good story in itself). The doctor said that despite being injected with cortisone, my body reacted like I just drank a whole bottle of it, and that was pretty rare. Considering everything about me is pretty rare, it wasn’t really a shock. But it was awful.
I then went to a different OBGYN, and I finally had the big discussion I had been wanting to have for many years. I wanted to talk about having a partial hysterectomy, which meant having my uterus removed but keeping my ovaries. Considering I don’t want to have children due to having two genetic diseases, and the fact that my body wouldn’t be able to actually handle a pregnancy, having a hysterectomy still seemed like a big deal, but it wasn’t going to ruin my future plans of having a family. I’ve always wanted to adopt, and I don’t need my uterus for that.
My periods are sporadic, so I many times can’t even tell when I will get them. Sometimes they last a few days, sometimes one week, sometimes several weeks without stopping. I live in constant fear of my own body because when they come, I am bedridden. I’ve missed work, I’ve canceled parties, I’ve missed events, I struggled to complete both highschool and college, all because of the pain I have to endure over and over again. After ten years of everything I could, both my doctor and I agreed that this was the best option for me to finally live a healthier life. The basic idea is that if I get rid of the uterus, and I stop the periods, my body won’t have a cycle to react to, which means less pain. But, by keeping my ovaries, I can still produce hormones which are needed especially in young women to stay healthy.
However, this particular OBGYN completely disagreed for one reason and one reason only- I’m young. Which clearly means I am naive and idiotic, right? She told me she would not sign off on the surgery, and instead told me to get an IUD. Frustrated but more desperate than ever, I agreed to try it. She told me to come back the next time I got my period, and she would put it in for me. So, I did.
The day I went back, thankfully, I got a different doctor because the first one had been out. I was in a ridiculous amount of pain when I went to the hospital that day. I couldn’t sleep and was barely walking. I walked down the freakishly white hallway, trying to talk to the nurse but having a hard time concentrating. They sat me in the doctor’s room, got me some water, and I waited. The new doctor came in and I had no idea what to expect, nor did I care. I truly just wanted relief, and the IUD was supposed to give me that. I sat on the bed and I couldn’t stop crying because, obviously, I hurt. I hurt more than I thought the world could ever understand, more than my spine could take, more than I as a person could take. But this doctor understood. She was so amazingly warm and sweet, and I ended up telling her my whole story. She carefully listened, and when I was done, she told me not to get the IUD.
She informed me that IUD’s take months, sometimes even a year to settle, and can be extremely painful. Aside from the pain I already have, I also have Vasovagal Syncope, meaning I pass out if I feel too much pain or discomfort. She told me I would be passing out nearly every day and on top of everything else, since I generally react poorly to, well, everything, she didn’t want to take the risk of putting an odd object into me. The first OBGYN told me none of this. When I told this one that I was not informed at all about it, she said the other doctor was being biased, and that while she believed the best thing to do was for me to have the hysterectomy, it would be harder for me because I am young, and doctor’s biases would get in the way.
What. The. Fuck.
After all that, she told me she would put in my medical records that she supported the surgery, and that the next step was to go to Stanford to have their blessing as well, that way when I move to Missouri in the summer, I would have several doctors behind me, and it would hopefully make the whole process easier. She told me I should have the surgery here, as soon as possible, but I explained that my mother, who I live with and who currently provides my health insurance, was entirely against it and told me having a hysterectomy was not my choice (Who does get to make that choice, I don’t know, but apparently it isn’t me, according to her). So, I have to wait till I move out, find a job, get insurance, and save enough money to actually pay for the surgery. For now, as this doctor advised, I am doing as much as I can to support my cause here.
Whether I have a hysterectomy or not, I can never have children. Considering I do want a family, it is a little heart breaking, but I firmly believe that just because a woman can’t have a child from her own body, doesn’t mean she shouldn’t be a mother. Likewise, some women who do physically have the ability to have children aren’t always fit to be mothers. It goes both ways, I’ve learned. I also decided a long time ago that getting pregnant, having a child, and then dying or being permanently damaged from it would not at all be worth it. Why have a child if I can’t be alive or well enough to be a good and attentive mother to it? The risks for even perfectly healthy women who give births are already high. For me, they’re out of this universe.
What troubles me more than anything about my situation is not the part where I cannot have children. It’s the part that at nearly 25 years old, both my own mother as well as some doctors put their own biases above my health. Because of that, I have to suffer for Glob knows how long. The severity of this pain is far from normal, and no one deserves to feel like their body is being torn apart. The pain is truly unbearable and people who hardly know me think it’s “normal.” Well, for lack of a more sophisticated phrase, fuck them. This is not okay. I am not okay.
This may be one of the hardest fights I’ve been challenged with. But it is one that I will fight hard in, because I am not living a healthy life this way. I can’t be social or work or cook or drive. Instead of that, I lay in my bed, and I cry for a week, and occasionally sleep when I exhaust myself between the constant mental and physical pain. Then I wake up, and my body feels like it’s being torn to shreds, and I cry more. Not because my period causes mood swings, or because I’m a girl. I cry because my body fucking hurts, I am sick, I am frustrated, and I am scared that I will one day just break apart because of it all. I hate this, and it has to get better. It has to. I’m going to make sure it will.
For now, it’s really Ellie vs. Ellie. I sure hope Ellie wins.
Let’s break the window panes
and separate the walls from all the nails
Cuz maybe if we’re loud, we’ll stay alive
While everybody wants to join the fight
But even if we barricade the door and seal it with the
Blood found on the floor
We’re always going to cross the finish line
While everybody wants to run and hide
But now it’s too late.