Eight Weeks Later...
Women's health issues ahead.
About 8 weeks ago I woke up bleeding excessively, feeling faint, in tremendous amounts of pain, and I shouldn't have been. Two days before that morning I'd had an elective procedure to treat menstrual symptoms that were untreatable by other means. The procedure had failed.
Roughly 20 years ago I started my monthly cycle. From the the very beginning I had a tremendous amount of pain, heavy bleeding, and other pain-related symptoms. As a teenager my doctors blamed my symptoms on "being a teenager". In other words, my terrible periods could be explained by my age and they didn't ever look any deeper.
As I moved into college the symptoms only increased. There were a few times in my college days when my I was put onto birth control pills to "control" my symptoms. Usually, these only helped to regulate my cycle. Meaning that my periods, which were still heavy and painful and long, would at least happen on a nearly predictable schedule. During this period I would try to use BC pills for only a short period of time because I didn't like they way they made me feel.
The year I got married I had a cycle that was so bad I thought the bleeding would never stop. I ended up on BC to "stop" the bleeding. I would spend the next eight years trying every form of birth control available. I went through several forms of the pill and each would manage my symptoms for about 9 months and then things would get unpredictable again. At one point my doctors even had me try the IUD. This was a colossal failure, it fell out twice, and caused depression and a massive increase in weight. After the second one fell out my doctors simply put me back onto another BC pill. There was never any discussion about what could be causing my symptoms, a complete lack of care that they were getting worse, and a hands in the air attitude about it.
In 2016 I finally convinced a doctor that maybe they should really be looking into some causes. I ended up having an ultrasound where I was told that there was nothing "structurally wrong" with my uterus. In the meantime my health continued to get worse.
In 2017 my periods grew ever worse, ever heavier, my pain during my cycle increased and for the first time in my life I started to have back spasms during my period, and the pill was doing nothing to regulate the timing of my cycle. It was to the point where I was not sleeping for 2-3 nights of each cycle because I was in so much pain and nothing I took would cut the pain enough for me sleep.
By this time I'd done every ounce of research that I could and I just knew that there was something wrong. I also knew that my doctors were ignoring my symptoms and weren't interested in treating it. So, I fired my doctors and hired a new one.
My new doctor, for the first time in my life, actually listened to me. He decided to not just discuss my symptoms and possible band-aids. He was really interested in finding the source of the issue and he was incredibly up front about the fact that treating it might require "extreme" actions. I was so excited to have a doctor that actually listened to me and wanted to really help me. We had a plan, we were going to schedule a laparoscopy to see and likely treat endometriosis. Imagine my horror and fear when I found out that my insurance wouldn't cover the procedure because the hospital my doctor worked at was out-of-network. Luckily for me, my doctor had a great recommendation for a doctor that's hospital was in my network.
I met the new doctor. He was ever bit as interested in really treating me as a patient and he respected my ability to self-determine my desired outcomes. I first met him back in February, it would take another 6 months to receive my treatment. This was a combination of jumping through more insurance hoops and scheduling around school.
The insurance refused to cover any surgical procedure prior to an endoscopy. This revealed a fibroid and my doctor still suspected endo. At this point we, with financial influence from the insurance company, decided that we would stick with the lacroscopy for endo and do a fibroid removal and ablation.
Between this decision and my surgery I got ridiculously sick. I had no energy, I was struggling with breathing - even doing minimal physical activity, and I was wearing sweaters in nearly 100 degree weather because I was cold. I went to see my primary care doctor and I was so bad that we were talking about the possibility of Hoshimoto's and other autoimmune disorders. We started with incredibly thorough labs. It turned out that I was just nearly out of any iron in my blood. I was beyond anemic, I was scary-anemic.
The day of surgery came around. I had a terrible time coming out from under anesthesia. I woke up with pneumonia like symptoms and was throwing up. It took several more hours than it should have for me to be cleared to go home. I found out that the laparoscopy found an enormous amount of endo, including it wrapped around one of my ovaries, on a ureter, and all over my abdomen. They also found that my uterus was enlarged and so only a portion of the endo could be treated. Things didn't go much better with the fibroid. It was much larger than it had been during the endoscopy and filled 90% of my uterus. My surgeon did everything he could to remove it and perform the ablation. The problem was that the fibroid was so large and was bleeding so badly that the doctor had to just stop and do his best with the cauterization because I'd lost too much blood. (Remember that part about being scary anemic from above - I'd spent the time between those results and my surgery on iron supplements and eating an iron-rich diet-but my surgeon was still super worried about this problem).
I went home, I hurt, I had no energy, and I just hoped that was a normal post-surgery thing. I had surgery number one Tuesday afternoon. Wednesday was terrible, I just felt miserable. I woke up Thursday bleeding through pads and other things. This couldn't be right. I called my surgeon, he recommended coming back in and doing a hysterectomy. He was confident that the insurance company would NOW cover that procedure. Basically, the insurance prevented us from being able to plan on a hysterectomy and forced a situation where we had to do a procedure that we hoped would work but wasn't really sure that it would.
I went back to the hospital Thursday afternoon and had my uterus removed. When I woke up after surgery I felt so much better than I had before. It was like night and day better. I could think, I had an appetite, I was sore but nothing hurt more than my cramps before had. Since then, I've done my recovery, I've been cleared to return to regular activity, and I feel SO much better. I don't know that I've felt this good in nearly two decades. I'm so excited for what comes next.
But looking back I'm super frustrated with the medical institution. Birth control is a common treatment given to women with endo, but what I never knew and I'm assuming many don't, BC can increase your chance of getting fibroids. My horrible, life-draining, and painful periods were the result of endo and a fibroid. Its quite possible the fibroid was caused by the birth control. There has to be a better way to treat women's issues and we need to invest the time and research to do it. Then, even when doctors and patients know what needs to be done to treat something there is often an unwillingness by doctors and insurance companies to provide or cover the necessary treatment because "you might want kids one day". Some do, and that would be a really hard choice to make, but many don't want biological kids when things are that messed up. I'd also point out, that my stuff was so jacked that I'd likely not been able to conceive or carry a pregnancy anyways. We need to find a way to really have these discussions and allow women to make the choices that are both best for them physically and mentally.
Between this decision and my surgery I got ridiculously sick. I had no energy, I was struggling with breathing - even doing minimal physical activity, and I was wearing sweaters in nearly 100 degree weather because I was cold. I went to see my primary care doctor and I was so bad that we were talking about the possibility of Hoshimoto's and other autoimmune disorders. We started with incredibly thorough labs. It turned out that I was just nearly out of any iron in my blood. I was beyond anemic, I was scary-anemic.
The day of surgery came around. I had a terrible time coming out from under anesthesia. I woke up with pneumonia like symptoms and was throwing up. It took several more hours than it should have for me to be cleared to go home. I found out that the laparoscopy found an enormous amount of endo, including it wrapped around one of my ovaries, on a ureter, and all over my abdomen. They also found that my uterus was enlarged and so only a portion of the endo could be treated. Things didn't go much better with the fibroid. It was much larger than it had been during the endoscopy and filled 90% of my uterus. My surgeon did everything he could to remove it and perform the ablation. The problem was that the fibroid was so large and was bleeding so badly that the doctor had to just stop and do his best with the cauterization because I'd lost too much blood. (Remember that part about being scary anemic from above - I'd spent the time between those results and my surgery on iron supplements and eating an iron-rich diet-but my surgeon was still super worried about this problem).
I went home, I hurt, I had no energy, and I just hoped that was a normal post-surgery thing. I had surgery number one Tuesday afternoon. Wednesday was terrible, I just felt miserable. I woke up Thursday bleeding through pads and other things. This couldn't be right. I called my surgeon, he recommended coming back in and doing a hysterectomy. He was confident that the insurance company would NOW cover that procedure. Basically, the insurance prevented us from being able to plan on a hysterectomy and forced a situation where we had to do a procedure that we hoped would work but wasn't really sure that it would.
I went back to the hospital Thursday afternoon and had my uterus removed. When I woke up after surgery I felt so much better than I had before. It was like night and day better. I could think, I had an appetite, I was sore but nothing hurt more than my cramps before had. Since then, I've done my recovery, I've been cleared to return to regular activity, and I feel SO much better. I don't know that I've felt this good in nearly two decades. I'm so excited for what comes next.
But looking back I'm super frustrated with the medical institution. Birth control is a common treatment given to women with endo, but what I never knew and I'm assuming many don't, BC can increase your chance of getting fibroids. My horrible, life-draining, and painful periods were the result of endo and a fibroid. Its quite possible the fibroid was caused by the birth control. There has to be a better way to treat women's issues and we need to invest the time and research to do it. Then, even when doctors and patients know what needs to be done to treat something there is often an unwillingness by doctors and insurance companies to provide or cover the necessary treatment because "you might want kids one day". Some do, and that would be a really hard choice to make, but many don't want biological kids when things are that messed up. I'd also point out, that my stuff was so jacked that I'd likely not been able to conceive or carry a pregnancy anyways. We need to find a way to really have these discussions and allow women to make the choices that are both best for them physically and mentally.
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