Ramblings About Endometriosis
Very long and rambly post about flawed female reproductive systems and my own personal experiences with my reproductive system with lots of gory details.
Endometriosis is severely understudied. We really don't know that much about an affliction that affects a large percentage of the population, and affects it in a debilitating way. The main reason for this is because it's a woman's issue. I've been told my entire life that my cramps "aren't that bad" and "I have bad cramps too, but I still make it to work every day so you're going to have to learn how to get to school every day" and "does the ibuprofen help? Well, keep taking it then."
Women's pain is not taken seriously, and women of color especially are ignored when it comes to complaints of pain. In fact, women are generally seen as the weaker sex (yes, I'm using both binary and mixing gender and biology because those fallacies are also mixed up in this whole problem) - whiny, unable to handle the sight of blood, unable to bear pain, even though when men are hooked up to machines that simulate labor they can't tolerate it even half as well as women.
Consequently, the only forms of treatment for endo remain copious amounts of painkillers with their own side effects and long-term usage consequences or dangerous invasive surgery that A) most doctors won't even do because baby-making is a priority and women don't know what they want or what's good for them; B) if successful will still likely result in even more long-term consequences, particularly the full hysterectomy which requires the woman to go into early menopause and spend the rest of her life on drugs to treat *that*; and C) isn't all that successful, given the specific details that is endo in the first place.
So, all of that is to prepare the background for some musings I have about my condition - musings which may very well turn out to be incorrect because I am not a medical research professional who specializes in this area but that seem very plausible to me because of the dearth of knowledge that we even have on the subject.
Often, pregnancy can alleviate the symptoms of endo for a few months after childbirth. See, what endo actually does is cause some of the uterine lining to grow outside of the uterus. Most of the time, it means that it grows out past the cervix and into the vaginal canal, but sometimes it also means that random patches of uterine lining are hanging around in various places in the abdomen. So, when it comes times for the monthly cramps, the uterus tries to shed its lining and those contractions used to push the lining out, in essence labor contractions but without the baby, can happen in places where they're not supposed to happen. In addition to other things endo is doing, labor contractions outside of the uterus and lining shedding outside of the uterus can cause pain.
But when someone gets pregnant, sometimes the extra uterine lining that has grown down into the vaginal canal sorta gets sucked back up into the uterus to cushion the fetus. Because there are no periods for 9 months, those specific labor-cramps might not occur when this happens. Then, after childbirth, all the lining is basically used up (I'm summarizing here to make it more understandable in a short-form, obviously my language isn't going to be 100% medically accurate) and sometimes it takes a few months to grow back to pre-pregnancy levels. This means that, if this happens, the endo-caused labor cramps (which are above and beyond "normal" cramps) might not exist for a few months until the uterine lining grows back in those places where it's not supposed to be.
So, for what little we do know about endo, we know that pregnancy can affect the severity of the pain and some of its other symptoms. Unrelated to endo, we also know that many, many, many times a body might reject a fertilized egg for a variety of reasons and miscarry even before the host body is aware that it is pregnant. A rather large number of periods are actually miscarriages that we don't even know about. So now onto my particular case and my musings.
I was pregnant once. It was one of the worst experiences of my life and I hope to never go through it again. I had terrible cramps even without shedding the blood lining. I had the worst "morning sickness" all day long. I became extremely sensitive to smells, which further triggered the vomiting (a permanent side effect, btw - I remain that sensitive to those same smells years later and often have to fight nausea and vomiting when I smell them). And I had my other digestive symptoms common with endo - diarrhea, constipation, severe gas pain, etc. Basically, it was like having my monthly 2-day ordeal at its worst but for every day between the time my period was *supposed* to start and the day I was finally able to terminate the pregnancy.
Then, for the next 3 or 4 months, I had the easiest periods I've ever had. I experienced absolutely none of the digestive symptoms, and my cramps felt more like the early twinges that let me know that I'm about to start a 24-hour cycle of hell. I mean, they hurt, but when your pain scale is parked at 8, pain at 4 feels like a relief. I was downright giddy at how easy my period had gotten! If that's what non-endo people feel during their periods, no wonder they couldn't understand the severity of my situation! No fucking wonder women in commercials could go horseback riding and surfing during their "time of the month"!
Eventually, my cramps went back to normal and life resumed. But then, one month, I had an episode that was so bad, I started to wish for death. And as I had just come out of a suicidal depression, I mean that literally. I was actually hoping that I would just cease so that I wouldn't have to endure the pain anymore. I couldn't even get out of bed long enough to evacuate all the bodily fluids that were causing all the pain in the first place, and I had one bucket next to my bed for the vomit and another for the poop. I stayed in my sweat-soaked bed for 28 hours in a feverish delirium, awaking only long enough to void some cavity and immediately passing out again.
I wrote about that month. A friend even remarked on how hardcore I was to use my own pain like that to further my feminist goals by trying to help normalize the discussion around women's bodily functions and issues. Then I got to thinking. That month, my endo was the worst that it's ever been. It was as if my body had taken my entire few-week pregnancy and condensed into a single day. I did some math. Given the timing, I had a close call that month. It was within the realm of probability to have gotten pregnant given the last time I had unprotected sex with a partner who was still fertile.
So, now I wonder ... can the severity of cramps be related to the frequency of miscarriages or other situations involving failed implantation or fertilization? If so, would it only affect people with endo or could it affect everyone? I mean, non-endo people also have a range of severity for their monthly symptoms too, right?
As I was explaining yesterday, some months I pop a few pills and I'm like "WOOOO!!! Drugs!! I feel fucking great! Let's tear this shit up!" At least, I feel that way for as long as the drugs are in my system. About 5 hours later, if I forget to take my meds because I'm feeling so fantastic, I start curling up into a ball and crying, but as long as I take the meds, I'm floating on air that day. Other months, I pop a handful of pills and the best I can hope for is to be able to stand just upright enough that I can at least get myself from point A to point B without collapsing. The cramps are like a string is pulled taught in my abdomen and the straighter I am, the more tension is on the string and the more the cramps hurt. Some months all I get is just enough tension let out of that string to enable me to not be horizontal, which allows me to be technically functional.
So, since endo is obviously related to my reproductive system and the shedding of my uterine lining, and it can sometimes be temporarily relieved by pregnancy, I have to wonder if its symptoms are also otherwise affected by the variability of the reproductive system. Because the Far Right is hell-bent on reversing Roe v. Wade, some of us are becoming more aware of the complexity of the subject of conception. It's not a binary state - either you are or you are not pregnant / either there is or is not a baby. There are all these other states - an egg can be fertilized but not implanted. An egg can be fertilized and implanted but in the wrong place. The body can spontaneously abort before the host is even aware there is a pregnancy. More and more and more, that I don't feel like researching and listing. Bottom line is that it's not as simple as the anti-abortionists want us to think. It's not "you have sex, and then BOOM, a baby exists".
Throw into the mix alongside the complexity of the human reproduction system a lack of understanding of that system and especially of when that system is not working optimally under its given limitations, and that leads me to wondering how often I may have actually been experiencing a miscarriage? One of the symptoms of endo is the inability or difficulty to carry to term. The reason I am adopted is because my mom couldn't carry to term so she had to adopt in order to become a mother at all (of course, the doctors waited until she had 2 adopted children and at least one hospitalized miscarriage before they'd deign to give her a hysterectomy, knocking her into menopause at age 34 and condemning her to hormonal therapy for the rest of her life).
Since I've always been so careful about timing, I haven't had all that many close calls in my life, and the one time I was confident we were too close really did result in a pregnancy which I terminated, I don't have very many data points about how pregnancy or conception affects my personal association with endo. It makes me wonder, if we could hook up all fertile people with uteruses who have PIV intercourse with fertile people who have penises, if we could somehow monitor the "pregnancy" status of all those people all the time, how often would we see the loss of a fertilized, viable egg? A fertilized but non-viable egg? What would that mean for the fight for abortion rights? And how would that pattern correlate with each person's own patterns in their reproductive cycle?
I have no answers, no directed rant, no challenge, not even any real awareness-raising goal. I'm just pondering my body and wondering what all these things about my body *mean*, and what *that* could mean in the larger cultural context if we had the answers to all my questions.
Endometriosis is severely understudied. We really don't know that much about an affliction that affects a large percentage of the population, and affects it in a debilitating way. The main reason for this is because it's a woman's issue. I've been told my entire life that my cramps "aren't that bad" and "I have bad cramps too, but I still make it to work every day so you're going to have to learn how to get to school every day" and "does the ibuprofen help? Well, keep taking it then."
Women's pain is not taken seriously, and women of color especially are ignored when it comes to complaints of pain. In fact, women are generally seen as the weaker sex (yes, I'm using both binary and mixing gender and biology because those fallacies are also mixed up in this whole problem) - whiny, unable to handle the sight of blood, unable to bear pain, even though when men are hooked up to machines that simulate labor they can't tolerate it even half as well as women.
Consequently, the only forms of treatment for endo remain copious amounts of painkillers with their own side effects and long-term usage consequences or dangerous invasive surgery that A) most doctors won't even do because baby-making is a priority and women don't know what they want or what's good for them; B) if successful will still likely result in even more long-term consequences, particularly the full hysterectomy which requires the woman to go into early menopause and spend the rest of her life on drugs to treat *that*; and C) isn't all that successful, given the specific details that is endo in the first place.
So, all of that is to prepare the background for some musings I have about my condition - musings which may very well turn out to be incorrect because I am not a medical research professional who specializes in this area but that seem very plausible to me because of the dearth of knowledge that we even have on the subject.
Often, pregnancy can alleviate the symptoms of endo for a few months after childbirth. See, what endo actually does is cause some of the uterine lining to grow outside of the uterus. Most of the time, it means that it grows out past the cervix and into the vaginal canal, but sometimes it also means that random patches of uterine lining are hanging around in various places in the abdomen. So, when it comes times for the monthly cramps, the uterus tries to shed its lining and those contractions used to push the lining out, in essence labor contractions but without the baby, can happen in places where they're not supposed to happen. In addition to other things endo is doing, labor contractions outside of the uterus and lining shedding outside of the uterus can cause pain.
But when someone gets pregnant, sometimes the extra uterine lining that has grown down into the vaginal canal sorta gets sucked back up into the uterus to cushion the fetus. Because there are no periods for 9 months, those specific labor-cramps might not occur when this happens. Then, after childbirth, all the lining is basically used up (I'm summarizing here to make it more understandable in a short-form, obviously my language isn't going to be 100% medically accurate) and sometimes it takes a few months to grow back to pre-pregnancy levels. This means that, if this happens, the endo-caused labor cramps (which are above and beyond "normal" cramps) might not exist for a few months until the uterine lining grows back in those places where it's not supposed to be.
So, for what little we do know about endo, we know that pregnancy can affect the severity of the pain and some of its other symptoms. Unrelated to endo, we also know that many, many, many times a body might reject a fertilized egg for a variety of reasons and miscarry even before the host body is aware that it is pregnant. A rather large number of periods are actually miscarriages that we don't even know about. So now onto my particular case and my musings.
I was pregnant once. It was one of the worst experiences of my life and I hope to never go through it again. I had terrible cramps even without shedding the blood lining. I had the worst "morning sickness" all day long. I became extremely sensitive to smells, which further triggered the vomiting (a permanent side effect, btw - I remain that sensitive to those same smells years later and often have to fight nausea and vomiting when I smell them). And I had my other digestive symptoms common with endo - diarrhea, constipation, severe gas pain, etc. Basically, it was like having my monthly 2-day ordeal at its worst but for every day between the time my period was *supposed* to start and the day I was finally able to terminate the pregnancy.
Then, for the next 3 or 4 months, I had the easiest periods I've ever had. I experienced absolutely none of the digestive symptoms, and my cramps felt more like the early twinges that let me know that I'm about to start a 24-hour cycle of hell. I mean, they hurt, but when your pain scale is parked at 8, pain at 4 feels like a relief. I was downright giddy at how easy my period had gotten! If that's what non-endo people feel during their periods, no wonder they couldn't understand the severity of my situation! No fucking wonder women in commercials could go horseback riding and surfing during their "time of the month"!
Eventually, my cramps went back to normal and life resumed. But then, one month, I had an episode that was so bad, I started to wish for death. And as I had just come out of a suicidal depression, I mean that literally. I was actually hoping that I would just cease so that I wouldn't have to endure the pain anymore. I couldn't even get out of bed long enough to evacuate all the bodily fluids that were causing all the pain in the first place, and I had one bucket next to my bed for the vomit and another for the poop. I stayed in my sweat-soaked bed for 28 hours in a feverish delirium, awaking only long enough to void some cavity and immediately passing out again.
I wrote about that month. A friend even remarked on how hardcore I was to use my own pain like that to further my feminist goals by trying to help normalize the discussion around women's bodily functions and issues. Then I got to thinking. That month, my endo was the worst that it's ever been. It was as if my body had taken my entire few-week pregnancy and condensed into a single day. I did some math. Given the timing, I had a close call that month. It was within the realm of probability to have gotten pregnant given the last time I had unprotected sex with a partner who was still fertile.
So, now I wonder ... can the severity of cramps be related to the frequency of miscarriages or other situations involving failed implantation or fertilization? If so, would it only affect people with endo or could it affect everyone? I mean, non-endo people also have a range of severity for their monthly symptoms too, right?
As I was explaining yesterday, some months I pop a few pills and I'm like "WOOOO!!! Drugs!! I feel fucking great! Let's tear this shit up!" At least, I feel that way for as long as the drugs are in my system. About 5 hours later, if I forget to take my meds because I'm feeling so fantastic, I start curling up into a ball and crying, but as long as I take the meds, I'm floating on air that day. Other months, I pop a handful of pills and the best I can hope for is to be able to stand just upright enough that I can at least get myself from point A to point B without collapsing. The cramps are like a string is pulled taught in my abdomen and the straighter I am, the more tension is on the string and the more the cramps hurt. Some months all I get is just enough tension let out of that string to enable me to not be horizontal, which allows me to be technically functional.
So, since endo is obviously related to my reproductive system and the shedding of my uterine lining, and it can sometimes be temporarily relieved by pregnancy, I have to wonder if its symptoms are also otherwise affected by the variability of the reproductive system. Because the Far Right is hell-bent on reversing Roe v. Wade, some of us are becoming more aware of the complexity of the subject of conception. It's not a binary state - either you are or you are not pregnant / either there is or is not a baby. There are all these other states - an egg can be fertilized but not implanted. An egg can be fertilized and implanted but in the wrong place. The body can spontaneously abort before the host is even aware there is a pregnancy. More and more and more, that I don't feel like researching and listing. Bottom line is that it's not as simple as the anti-abortionists want us to think. It's not "you have sex, and then BOOM, a baby exists".
Throw into the mix alongside the complexity of the human reproduction system a lack of understanding of that system and especially of when that system is not working optimally under its given limitations, and that leads me to wondering how often I may have actually been experiencing a miscarriage? One of the symptoms of endo is the inability or difficulty to carry to term. The reason I am adopted is because my mom couldn't carry to term so she had to adopt in order to become a mother at all (of course, the doctors waited until she had 2 adopted children and at least one hospitalized miscarriage before they'd deign to give her a hysterectomy, knocking her into menopause at age 34 and condemning her to hormonal therapy for the rest of her life).
Since I've always been so careful about timing, I haven't had all that many close calls in my life, and the one time I was confident we were too close really did result in a pregnancy which I terminated, I don't have very many data points about how pregnancy or conception affects my personal association with endo. It makes me wonder, if we could hook up all fertile people with uteruses who have PIV intercourse with fertile people who have penises, if we could somehow monitor the "pregnancy" status of all those people all the time, how often would we see the loss of a fertilized, viable egg? A fertilized but non-viable egg? What would that mean for the fight for abortion rights? And how would that pattern correlate with each person's own patterns in their reproductive cycle?
I have no answers, no directed rant, no challenge, not even any real awareness-raising goal. I'm just pondering my body and wondering what all these things about my body *mean*, and what *that* could mean in the larger cultural context if we had the answers to all my questions.