, , , , ,

This is a guest post by Lorelei. It discusses abortion and euthanasia, and describes intense chronic pain. It was originally published here.

The best thing about being alive and having a chronic disease is having the ability to save yourself. It’s the most empowering thing in the world.

This is my story.

Years ago I began developing chronic abdominal pain that was eventually found to be adenomyosis, a progressive disease associated with uterine contractions, chronic pain and abnormal bleeding. I suffered for years at the hands of a quack doctor who tried to perform a “stabilizing” operation on my uterus with disastrous consequences and many other doctors who did their best to put me on different hormonal therapies, all with very limited success.

I would lose buckets of blood during periods that sometimes never seemed to end, only to have another one two weeks later. I would wake up in the middle of the night screaming from pain, awoken from dreams of being stabbed in the area where the pain radiated from. I would be reduced to staying in bed, trying not to move for fear of having another contraction, burning my abdomen with a hot water bottle. Any force exerted upon my lower abdomen would start a horrible cycle of pain – I stopped masturbating entirely. I had sex only when I could pre-medicate.

I could barely attend half of my classes, yet somehow still (barely) managed to graduate. I lived in Switzerland, a country where only the first nine years of school are mandatory. After that, most people do apprenticeships and only the ones who are incredibly motivated go on to do gymnasium (what would internationally be recognized as high school). I had finished my nine years of mandatory schooling from the most prestigious and difficult program with one of the highest GPA’s. I spoke four languages including Latin. I was going to have such a bright future. I’d been looking forward to getting into this school all my life and had planned out which courses I was going to take years in advance; I’d decided that my major would be Greek (Attic) and the rest of my non-language classes would be held in either English or German. I’d also planned on taking ethics and philosophy courses because I’d managed to ingratiate myself with the teachers earlier that year. I even went to a university fair where I impressed a philology professor by asking questions about Lithuanian stems and their relation to PIE. I was finally going to be free of all the other people who didn’t really like school or want to be there – the ones who’d been so distracting and made the experience so boring back in regular school. I see now that this was elitist and ridiculous, but I was also determined to be an academic.

But my body held me back. Three weeks after school started I had my first bout of pain. A month after that I had my first cyst – a monster at 6cm in diameter. The only way to manage the pain was through opiates. The only way to manage the bleeding was through hormonal intervention. Nothing was as unbearable as being conscious.

My life was not livable in this condition. I went to classes high. I took tests high – sometimes this was even an advantage. I was unable to have much of a social life, after all I couldn’t plan on when pain would strike and render me unavailable. I made and broke plans for a while and then eventually just stopped making them altogether.  Soon I would be in pain every day.

When I turned 18, I promised myself that I would only endure this for five more years. If I was still in pain then, something drastic would have to occur. I was fortunate enough to grow up in a country where talk of euthanasia is not shied away from. I knew I couldn’t exist indefinitely like this.

I had five laparoscopies. They were called exploratory surgery because my doctors didn’t feel comfortable actually diagnosing me with anything. I have one of those fun conditions that can only be “conclusively” diagnosed with a hysterectomy. I had secondary symptoms and characteristics of the diseases, but that doesn’t count for very much.

There’s a surprising amount of misogyny in the medical industry. We think of doctors and lawyers and judges as people who are the ultimate authorities on many things and are removed from the subjective biases of society, but that’s simply not the case. We need better methods of diagnosing endometriosis. The way it’s done here is that they simply open you up, inflate your abdominal cavity with CO2, and take a peek around. That’s it. No tissue samples are sent to pathology. This is unfortunate because recent studies have shown that over 40% of endometriosis looks normal, particularly if it’s the kind of endometriosis that you get as a fetus rather than through trauma as an adult. This disease typically takes seven years to diagnose, because that’s the amount of time it takes for it to become blatantly visible to the naked eye. In those seven years, the disease progresses and gets worse. People lose their jobs, their sexual function, their happiness and their social lives.

Unfortunately, hysterectomy, the one way to conclusively diagnose this particular type of endometriosis, is also the path of most resistance. It is nearly impossible to find a doctor who will give a woman in her teens or twenties, who has not yet had children, a hysterectomy. Even if she expresses no desire to have them. Even if she’s in chronic pain. Additionally, a large number of the hysterectomies performed result in sexual dysfunction, pelvic pain, loss of libido, loss of orgasm, suicidal inclinations and depression.[1] This is slightly lessened with hysterectomies that retain the cervix.

Instead they chose to coerce me into having my uterine ligaments sewn together with steel wires. They determined that this was less problematic in order to retain my precious fertility – but only as long as I was using it in a way that society had deemed acceptable.

Two months after this disastrous fiasco, I complained that my symptoms were getting a lot worse. He reluctantly agreed to undo his operation, all the while insisting that I was being unreasonable and hysterical and that this had never happened before. He insinuated I was ungrateful and that he’d wasted his “artistic talents” on me. It was disgusting. At the follow-up I told him what I intended to do – whereupon he called me a grotesque monster and told me to get out of his office. If anything, this strengthened my resolve.

And so I decided to have an analgesic pregnancy.[2] I chose this option after exhausting all the other possibilities because the hormones I would get during the first fourteen weeks of gestation would exceed anything that could be reproduced chemically. After these fourteen weeks, I would have an abortion and go back on progesterone supplements the same day. In this way, I could shrink and “freeze” the growth of this horrible disease.

It was the most empowering decision I’ve ever made. It was also the most difficult.

Analgesia at 8 weeks

Analgesia at 8 weeks

I know of no one else who has done this. If anyone else has done this, it certainly isn’t talked about. One of my better doctors made a throwaway comment, a joke, that maybe my symptoms would get better once I became a mother. I did my own research. I read papers about the effects of beta HCG on endometriosis. I took my own body into my own hands. It had become increasingly clear that no one was going to help me, least of all the people who were meant to be supportive.

People stood in my way. People whom I’d initially have thought to be supportive of doing anything I had to do to save my life. It broke many relationships beyond repair because of ideological differences. It hurt me too much to think that they’d have preferred to see me dead than a fetus. It hurt them too much to think of me rejecting my societal role as a mother for my own success and happiness, in a society where mothers are valued less than their offspring, as they felt it invalidated their own decisions.

My own relationship with my mother broke down when she became determined to dissuade me – she had been reared Catholic and believed I’d have regrets. I was at a point in my life where I had become so exhausted from trying the “acceptable” solutions fruitlessly, that I was ready to do this – in fact, I was just about ready to try anything that seemed to have even a slightly better shot of working than the stuff I’d been trying thus far. I’d been on everything – but she still believed that analgesic pregnancy was not the right decision. She believed I should spend several more years exhausting more options before this would be an acceptable thing to do – maybe a new treatment would be found, maybe progress would be made. But in hoping for an easy out in the future, she rejected a viable option in the present. I was 20 years old but still living at home, barely able to go to school and even less able to get a job or be financially independent. She contacted one of my doctors and insisted I get a birth control implant the next day when she found out about what I intended to do. I had nowhere else to go. I screamed at her and sobbed for hours. She thought she was doing right by me, but I felt coerced and controlled by someone who couldn’t imagine the depths of my suffering. She decided she knew better, infantilizing me. I was going to graduate in less than six months, but the thought of spending the next six months living with someone who had deprived me of my chance of a bearable life drove me to attempt an oxycodone and sleeping pill overdose later that week. I couldn’t handle the pain anymore. I couldn’t handle not having control of my own life and body anymore. I was exhausted from both. Our relationship still hasn’t recovered. I don’t know if it will. It’s taken another two years since then to get to where I am now. I feel like I’ve lost something I can’t quite describe.

I felt deeply betrayed by what I saw as her preferring a potential grandchild to a real daughter. Let’s be very clear: she was definitely wrong. I was an adult and she should have respected my bodily autonomy. However, her decisions were informed by the misogyny she grew up with and the patriarchy of Catholicism. She’s not the villain here. My disease is the villain. Patriarchy is the villain.  And I hate the fact that she was complicit in my victimization because I love her deeply, but she wasn’t entirely at fault. She was being manipulated and misled by a society which tells us that a lack of agency is normal and acceptable.  I should never have had to be in a position where I had to take my own medical decisions into my own hands, and out of doctors’. I should never have had to be in a position where if I did decide to do this, I would be questioned, infantilized, talked over and have my needs ignored. But that’s all on society, not her. She was telling herself that she was doing this to help me. Society was telling her that she needed to do this to help me. Society was also telling her that, as a woman, I couldn’t know my own mind, my own body or what was best for me, that I was destined to be a mother, and that I would regret this forever.

I had to overcome other hurdles as well. I was very lucky in that I happened to have the ability to ovulate practically at will,[3] and always became pregnant within the first few weeks of being off hormones, in spite of being in a long-distance relationship where we could only see each other every month or six weeks. Unfortunately, I also had a very high rate of miscarriage. I became pregnant eight times in as many months and had just as many miscarriages, most within the first two weeks, though one did make it to seven weeks before spontaneously being pulverized.[4] Needless to say, that was a very physically painful, scary and exhausting experience.

We gave up in August because I had to start university and I went back on hormones. Things weren’t greatly improved. In February, my new supportive doctor persuaded me to try again. I am currently at eight weeks.

I am not defined by my fertility or lack thereof. I am worthwhile as a person and am important as a person for reasons that have nothing to do with reproduction. Limiting my self-worth – my life, my quality of life, my happiness, my functionality, my health – to my ability to reproduce means I am inherently worthless, because my only worth is derived from that of hypothetical children – they are worth more than I as my own person ever could be to society. And that’s only because I could give birth to people with penises. Any people I could give birth to who lacked a penis would similarly be worthless until they could become the mother to people with penises. They refused to provide a hysterectomy. They also refused to support me in my mission to make my life bearable because it would sacrifice something they consider far more valuable – a fetus.

Doctors are people to whom my health and happiness should be a primary consideration – the fact that they instead chose to make sure I was so limited in my options that euthanasia seemed like the only viable option is disgusting. They compromised my health and happiness just because they felt they knew my life and experience better than I did. They felt their job was to make sure I fulfilled my societal role of being a mother – not of being a functional person.

I am not defined by my fertility or lack thereof. Like all other people, I am worthwhile as a person with a marvelous magical mind and a beautiful body and a caring and insightful personality. However, matters beyond my control have led me to become emotionally stunted, physically mutilated and desperately tired of being alive in such a condition. And without hope for change from this wretched condition, only hope for death remained for me. No one should have to live like that. And after so many years of this, hope for change is very difficult to come by. That’s why this is important. Because in making my stand, in using my body to my advantage to make myself a full person again, and therefore committing the ultimate act of self-love, to say that I am more worthwhile than any child borne of me ever could be or should be to me, to say that I am more important, more deserving of life, love and happiness than any hypothetical or real children I might ever have, I am giving myself hope for life.

I intend to live. I know this will make people furious. Bring. It. On.

[1] The HERS Foundation is openly anti-hysterectomy, but it’s also one of the few organisations that have been collecting data reliably about this for a long time so I feel comfortable referencing them. http://www.hersfoundation.com/effects.html

[2] Analgesia is a Greek compound word for pain relief. An analgesic pregnancy is a term I coined to describe a pregnancy that would give me pain relief.

[3] Sidenote: Spontaneous ovulation has been curiously observed in sufferers of endometriosis before, once even during a hysterectomy. This seems to occur when the person is feeling particularly secure and happy.

[4] Funny story: In my ultrasound, there was a terrifyingly large mass that was at least three times the size of the embyro. The embryo had no heartbeat at that point, which it should have had (being at seven weeks).  A week later, the embryo had disappeared (but not the mass). My doctor describes what must have happened as the fetus being pulverized/exploding by the massive force exerted upon the placenta by the much larger placental site tumor.  I needed a D&C (dilation and curettage, wherein the cervix is dilated and the contents of the uterus scraped out) to remove the mass.