Written by Kiera
I knew I had endometriosis when I was in middle school. My grandmother told me of her painful experiences with it back in the 1960s, when she opted for a full hysterectomy to relieve herself of the pain in her mid-twenties. My mother had it as well, diagnosed via laparoscopy that allegedly cured it. Prior to my menstrual problem, I had very frequent nose bleeds as a child. Some of them got to be very heavy and violent, ending up in the ER several times. I also had severe allergies, allergic to almost all pollens, grasses and trees. Not good allergies for a kid in Montana. But I believed it was normal, and that I just had to deal with it. And that was the attitude towards my years of menstrual pain.
I have a very clear memory of being in the kitchen one night when I was in seventh grade. I’d just gotten home from babysitting and I collapsed on the floor. It felt like a grenade had gone off on the left side of my abdomen. I just lay there curled up for over an hour until I was able to pick myself up and slowly carry myself back downstairs, and being as quiet as I could so I wouldn’t wake anyone up. My mother took me to a gynecologist who prescribed birth control pills that made it worse. I was never taken seriously by the doctors I saw.
I struggled with depression and anxiety most of my life. I had a very stressful home life; my parents were always arguing, and putting me in the middle. I was the oldest, and mature beyond my years. I was always the person my mother would vent to, mostly about her marriage, sometimes work; sometimes it was just about being a parent. I tried to come to my mother and vent to her about my issues, but she always brushed me off, snapping back that it was harder to keep a family together and keep a house and work, so quit complaining. When my parents finally got divorced when I was fifteen I thought it would get easier, but in a lot of ways it just got worse. I couldn’t stop fighting with my mother, I was struggling in school, I felt completely alone and to my parents I was just trying to get attention. I began thinking of suicide and ended up on antidepressants and anti-anxiety medication. Then my parents began to believe I really had issues, and after a while, with the interventions of a therapist and social worker, things got a little better at home, and stabilized till I left for college a semester early.
The problems began to arise when I couldn’t tolerate the drugs anymore. They had helped me in the short term, I lost about sixty pounds and I did really well for a while, but instead of being gradually taken off the Prozac and Klonopin, and then learn to live without it, my doses kept being increased, and I developed a bunch of uncharacteristic behaviors. I had extreme mood swings and my cognition was completely altered. I was diagnosed as bipolar, and they added Abilify to the mix, and my symptoms did not improve. I began vomiting all the time and couldn’t keep anything down. The psychiatrist changed my meds, taking me off Klonopin, from 5 mg once at night and once as needed to 1 mg of Xanax three times a day. He also added Lithium and Ambien on top of the Prozac and Abilify. I got gradually worse and worse, getting a metallic taste in my mouth from the lithium and not knowing if I had toxicity (I never got my blood tested since being prescribed it) and hallucinations. In the hospital, my meds were revised again, to Geodon, Lithium, Abilify, Prozac, Xanax, Ambien, Cogentin, and Loritabs. After a couple weeks I could not walk in a straight line or speak without my words being slurred. I was so drugged up I could not function. The psychiatrist I saw outside the hospital took me off Abilify, Geodon, Cogentin, and Prozac cold turkey. I felt so terrible after going off them and had no idea what to do. I was having racing, erratic thoughts, I was paranoid and I just felt like I was going to really lose it. I made an appointment to see the psychiatrist again, and waited for him for an hour and a half in the waiting room, only to have him emerge and tell me he couldn’t see me that day, reschedule with the receptionist. Well, the soonest availability was in two and a half months. I stormed out and I never went back. When I got home I threw out all the meds I had and was done. I went through two months of convulsions, vomiting, and overall being out of my mind with the withdrawals.
Around the same time, I was diagnosed definitively with endometriosis in a very unusual way. I developed a large sized lesion growing on the outside of my navel, and when you looked at it, it seemed to be a hernia. I saw a thoracic surgeon to remove it, and believed it was a hernia right up until she called me back post op, with the pathology results. She told me it was endometrial tissue they had removed, not a hernia, and suggested I see a gynecologist to treat it further. I was completely stunned. I had read about rare cases of endo where it is found on the brain and lungs, but I had never heard of something like my own case.
Nonetheless, I now had the diagnosis and the label I needed to get taken seriously. Or so I thought. The answers I got were all formulaic, textbook responses and the only treatments offered were hormones and surgeries. Three gynecologists and nurse practitioners wanted me to go on Lupron, which would stop my cycle and cause a bunch of side effects, like mood changes, loss in bone density, and other big changes that I was not willing to try. Also, the injection scared me; with pills I can just stop taking them if they have a bad effect on me. With injections, you get them and can’t go back, and if the side effects are too much, you just have to deal with them.
On Oct. 30th, 2012, I went in for my first and last laparoscopy, and they were to insert a Mirena afterwards that was supposed to help in the future. Before surgery they kept telling me about how they might not find any endometriosis, I ignored them. I knew it was there. It was; I had it behind my uterus, on my ovaries, particularly my left, which also had a huge chocolate cyst and a few other places throughout my pelvic region. I went in for my surgery at 8am and was not released until seven that evening, and was readmitted to the ER an hour later with internal bleeding. I was sitting on my friend’s couch shortly afterwards and suddenly, I got an extreme pain in my abdomen, it felt like crushed glass was being pushed out from inside of me, and I screamed when I felt it. I was rushed in with tearing, burning, and searing pain, I was screaming because it was so intense, something I have never done in my life, and the nurses only got angry with me and told me to calm down. I could feel I had something seriously wrong, and they thought I was just being a drama queen. They finally realized that I had internal bleeding and injected me with some kind of painkiller that made my mind foggy. I vaguely remember being admitted and receiving blood transfusion. I more vividly remember being catheterized while still conscious and crying in pain, and the next two days I was hooked up to a morphine pump and I can’t remember much of anything till I was finally released. I thought the nightmare was over, but, of course, that would be too easy.
While the pain was supposed to get easier every day, it just kept getting more and more intense. I couldn’t lie down anymore, I had no appetite and I could not use the bathroom at all. My stomach kept bloating and I finally ended up in the hospital again. The whole time I was there I was only given pain pills and laxatives. I finally asked to be checked out after three days because I got no positive results from the hospital stay and I was dying to be able to take a step outside again. So, I was out for a few days and went back to the ER when the pain and bloating continued to get worse. I finally had an MRI done on my abdomen and found that there was still blood in my abdominal cavity from the internal bleeding. I was prescribed more pain pills. I went to several doctors and the ER four times, and called my surgeon continuously, not hearing back from him. I finally ended up in the ER for the last time during this disaster and they realized that the collected blood in my abdomen had developed a Staph infection, and formed a huge cyst in my abdominal cavity. They scheduled an emergency procedure for two that afternoon. It was a Saturday. I was admitted yet again and waited with an IV in my arm and on the highest dose of morphine they could have me on, and I still could not sit comfortably. Finally I went in for the procedure and they drained most of the blood and pus from my abdomen, and I spent the next few days in the hospital with a tube stuck in my belly and attached to a bag where the blood and pus they couldn’t get to in surgery would be collected. I was also on an IV twenty four hours a day with IV antibiotics.
I didn’t have a lot of support during this whole ordeal, my mother just didn’t seem to understand the severity of it, and had no compassion for me. My father might come visit me for five minutes here and there, but he never stayed long and it always hurt to have him only visit abruptly. My parents would bring me stuff to keep me busy, and in a lot of ways that was worse. It felt like it was easier to bring me books and crossword puzzles than to actually be there for me, which is what I really needed. I remember being so scared and alone, and my parents just didn’t seem to care about what I was going through. My friends would visit me now and then, but I just felt very alone each time I was in the hospital.
On Thanksgiving, I thought I was going to be released. A friend of mine came to pick me up and we were in the hospital room, starting to get ready. Before I knew it, the hospitalist barged into my room and physically pushed my friend out and locked me in the room. Soon, the hospital security and a bunch of other staff showed up, and they were all giving me this disgusted look, like I was a criminal. I had no idea what was going on at first, and I was trying to figure out if I somehow did something illegal and was under arrest.
It was worse.
The night before, my mother had come to see me, and it was not in a good way. She alleged that I had been “talking to people that weren’t there” and she started to tell me about how she wanted me to go back on the drugs, that I needed them. She had absolutely no idea what I went through during my withdrawals, even though I told her over and over. I tried to tell her that I don’t do well on narcotics and it has caused me hallucinations before, she told me to quit making excuses. We got into another screaming match and I told her to leave. I made the mistake of trying to reach out to one of her friends, whom I thought I could trust after several months of going to her for guidance. I told her that it’s when my mother treats me like a crazy person that triggers my suicidal thoughts. She took it upon herself to call the hospital and told them I was going to commit suicide. So the hospital took out a court order to have me committed.
Obviously, I was extremely distraught. I was alone in the hospital room with these staff members who had the power to be as nasty as they wanted to me and I couldn’t even come forward about it, because I was then branded “mentally unstable.” An evaluator came to see if I was, in fact, in need of being committed. I knew I had no chance at convincing him of anything from the start. I felt completely erratic from the morphine that had been pumped into me over the course of my hospital stay. I was completely on my own, trying to defend myself against hospital staff who were screaming at me, accusing me, saying they didn’t want to be doing this on Thanksgiving (as if I did!!!). And the looks they were giving. That was the worst. The angry, disgusted glares, like I was someone, something truly revolting. I will never forget the way they looked at me.
I just came undone. Of course I did, and I every right to do so. What they did was fundamentally wrong; they violated my rights as a patient, and as a human being. I had literally just gone through the most mentally, emotionally and physically traumatic time in my life, and this was making it so much worse. They were talking about sending me to the state hospital, where I knew it was even worse. There was a girl who had been raped there, and a few people had disappeared. I was completely unraveled at the extreme likelihood of being trapped there like a psychotic prisoner, forced to go back on those drugs that I had worked so hard to get off of.
In the end, they sent me not to the state hospital, but the psych hospital across town, and I was stuck there for another week. The nurses were not gentle as they yanked out my drainage to be, I had to be held as the nurse yanked as hard as she could and couldn’t get it out. I was not a human to that nurse. I was something that had to be put away, so she had no mercy in her angry, judging eyes. I screamed blue murder until the tube was at last pulled free of my body, and then was transferred to an ambulance via stretcher that I was strapped down to (for liability reasons, they said) and drove me across town.
I was appointed a public defender (that really helped my self-image) who I had to work with to get out. He made it clear to me that in order to get out, I would have to be cooperative. I refused drugs as long as I could, but the only way I could get out was by playing the game. So I would take the pills and go into the bathroom, the one place without cameras, and flushed them. I knew I’d be fine as long as I didn’t get drug tested, and I managed to be released before they could. All I wanted was to be out of there. I was so upset and would break down, and they threatened to send me to the state hospital if I didn’t stop, smiling as they did so.
To top it off I got to spend my twenty-first birthday in the crazy making house, and I only got one visitor the whole time I was there.
In this psych facility we were not allowed to have emotional outbursts. I could not go outside, and I was completely invalidated and disrespected the entire time I was there, and when I left I was more traumatized than ever. So I did the best I could to “fake it till ya make it!” The nurses’ favorite saying to me. It made me sick, but I did it to get away from there. I convinced the court appointed attorney I was, in fact, mentally sane but considering the circumstances, I was not in a good place. So he decided to have me released.
I got a lecture at discharge, saying how important it was to stick to my meds, that the meds were helping so much. I gave them a fake, jaw clenching grin and nodded. I went to pick up the prescriptions for antidepressants and benzodiazepines, because I knew that they would be checking on that. Then I flushed them all down the toilet. I didn’t need it.
I never went back to either hospital, and skipped my follow up appointment with the surgeon that had been scheduled before my operation. That was the only hospital with gynaecological services for about two hours, but I refused to go back under any circumstances. The Mirena caused me extensive pain even after the abscess was cleared, so I went to Planned Parenthood and had them remove it after six weeks. I passed out and it took me a while to regain my equilibrium so I could drive myself home.
I couldn’t live in Missoula anymore. I was labeled insane, and almost everyone was judging me. So less than five months after the event that I now know as the “botched lap,” I moved three thousand miles East from my hometown Missoula, Montana to Western Massachusetts. Just to be safe.
Fortunately, after living in Mass for almost a year, I have had no hospitalizations. It was easy to obtain health insurance through the state, but I found that my treatment options really weren’t all that much better. I was able to go see a reproductive endocrinologist for my endometriosis, and she gave me the most information than any other doctor I had seen since the surgery. I finally found how bad my endo was (Stage two, borderline stage three, better than I had thought). However, my left ovary was blocked by a massive cyst, much like the one that was removed during the lap. After the lap, I developed a few lumps on my navel, small endometriomas that were no longer completely internal. I still have them today, but through herbal treatments and making a lot of changes (breaking off contact with my mother, eating better, and understanding myself a little bit more to start) I have been able to keep them from bursting out of my skin like the last one, and I can manage my pain a lot easier. I am able to do more physically than I was a year ago, I don’t go to the ER anymore, but I still have a long way to go.
Since I moved out here, I have not taken any prescription drugs, apart from a progesterone birth control pill, which I quit seven months ago. I have seen a therapist who gave the psychological diagnosis of PTSD. No bipolar, no ADD, no BS. She also confirmed that a lot of it stems from the hospitalizations. I am not mentally ill.
These people have no clue what they did. They must have really thought that I would be committed, drugged, or just be too afraid to do anything. I came away from there so traumatized, angry and revolted; I was not going to let them get away with what they did. Unfortunately, I’m not the only who has had an experience like this. There are so many people out there who have been seriously violated in many ways, and medical personnel can get away with it because of their power. It has cost some people their lives, and it is going to stop. Everyone deserves decent health care, and they have the right to be treated. Hospitals care more about lawsuits than they do their patients. A lot of medical professionals see everyone as nothing but cattle.
My complaint is not of Western medicine itself, but the industry corruption. The healthcare industry has been causing a lot more harm than good to so many people. They have been traumatized, seriously injured, psychologically damaged, and even killed by the irresponsibility and the lack of humanity of those we trust with our health, our bodies, and our lives. As far as I know, I did not sustain any permanent damage. However, I have not gotten confirmation from a doctor; I have been unable to find anyone who will examine me to see if I do have further complications. Every request I have made in the last year has been ignored. At this point I am so frustrated I don’t even try to see a gynecologist anymore, I always leave angry and unheard. I do hope that my feelings will change someday. The best thing I can recommend to women with endo is to take your health into your own hands.
In conclusion, I reached for something bigger…
The improvements people have made with changing their diet alone is phenomenal. Endometriosis often has a strong psychological component as well, and I found my body has been manifesting some emotions I have repressed in a dangerous way. Feel free to feel what you feel and don’t be ashamed of it. Express it. If you have built up anger, start kickboxing. If you’re upset, cry. Trust your instincts and surround yourself with people who encourage you. And do not stay silent; speak up for your rights and the rights of everyone else. When we all work together, when we push back and let them know that this is not tolerable, we can make enormous strides. There is freedom in speaking up and allowing that inner self to be heard. Take back your rights as a woman and for your body’s health.
Thank you for sharing your amazing story. We can tell that you are an incredibly powerful woman.