Welcome, Mamma Crew! Today is Mamma Thursdays when it’s all about us! The mammas! Today will be the first episode of a 3 part series discussing my experience with a total hysterectomy. Ouch!
If you listened to episode 2, you know that part of the reason I became an older mom had to do with my battle with endometriosis, or what doctors call benign cancer. What does that mean? Well, if you look it up, you find a neat little definition that tells you it’s a painful disorder in which the tissue that normally lines the inside of the uterus, grows outside the uterus. What this nice little package neglects to tell you is that you are lucky if the disease only involves your ovaries, fallopian tubes, and the tissues lining your pelvis. Because endometrial tissue continues to act as it normally would, it thickens, breaks down and bleeds with each menstrual cycle. So, yes, you are bleeding internally. It’s a lot of what causes the pain. Internal bleeding, let me tell you, is just not fun, but certainly not the only reason pain becomes your companion in this nightmare. The displaced tissue has no way to exit your body, it becomes trapped. The surrounding tissue becomes irritated, eventually developing scar tissue and adhesions. This abnormal bands of fibrous tissue can cause pelvic tissues and organs to be bound together. You can also get chocolate cysts, also known as endometriomas, I had one, which are cysts that typically form deep within the ovaries that are tar-like in appearance. This is not, however, the only place they form, as I was rudely going to find out.
Ever since I was thirteen years old, I had mind-numbing menstrual cramps. I didn’t realize how atypical these cramps were until several decades later when I was in active labor for 12 hours and didn’t cry. My OB/GYN couldn’t believe how calm I was but the reality was that active labor did not come close to the pain I had endured for decades. Pain– I had to live with it for long before the advent of wonderful over the counter anti-inflammatories. But it was far more than pain. I would get the sweats, nose bleeds, vomiting, and dizzy spells that sometimes resulted in my passing out. It was impossible to be a normal teenager because at least 3 days out of the month, if not 4 or 5, it was impossible for me to function. I had to stay home in bed whether I had a test or a social event. There was no other option for me.
In my twenties, things seemingly improved because over the counter anti-inflammatories stopped the pain and with it went the dizzy spells and vomiting. The nosebleeds still happened now and again, but I no longer had to worry that I wouldn’t be able to work or pass out on the street. I thought things had improved only to discover that my digestive system had become over-sensitive during my menstrual cycle. Intestinal spasms are like a special kind of hell that would double me over and make me wish I didn’t exist. But hey, they came with the added bonus of massive shooting diarrhea that would seemingly drain my body of all fluid. Most worrisome was the feeling that diarrhea would one day spurt out of my body without warning. It never happened, but I lived in agony over the possibility that it could or would happen. And, living with the ceaseless exhaustion that always threatens to overwhelm me. Yet I somehow assumed it was normal. Sure, my mom didn’t have any cramps, but all of my paternal aunts had severe menstrual cramps and a lot of the same symptoms I did such as passing out, or the nosebleeds, the stomach issues. So, normal, right?
By the time I was in my twenties, living with endometriosis was such a strong part of my life that I didn’t even think about it. It was just normal. I had been doing it for so long that it seemed that my coping mechanisms were as normal as breathing. Besides, most gynecologists, certainly all I consulted, downplayed it as menstrual pain and nothing more. I was never given any real options or ever explained what was happening inside my body. All I was told was that I could take birth control if I wanted. And this was all before easy access to information on the internet, so I floundered around in my ignorance making decisions that would lead to a lot more misery.
Naively, I thought it couldn’t possibly get any worse, but when I fell madly in love at the age of 24, I made yet another horrible discovery. Sex could be an extreme pleasure or out the blue feel like I was being burned from the inside out. There seemed to be no rhyme or reason for the outcome, and I was too embarrassed to talk with a professional about it. Instead, I tolerated horrible burning sensation and random lightning bolts of pain that ended all pleasure to leave me crying in fetal position time and time again. It didn’t do wonders for my sex life, but I was blessed with a young man that loved me. And while neither of us understood what was happening, or what we should do about it, we clung to each other in our young love. Unfortunately, our relationship ended when he died only a year later — just a month away from celebrating our marriage.
My inaction landed me in the hospital with a phantom illness that required a ten-day hospitalization. Multiple, uncomfortable tests later, doctors found a mass on my ileocecal valve and decided that I must have carcinoids. I didn’t cry when he told me I had a life expectancy of 5 years. I knew full well what it meant. One of my aunts had died of carcinoids so I knew what’s going to come. It wasn’t that I wasn’t afraid. It was that everything in my heart and in mind told me the doctor was wrong. That it was probably my nemesis — endometriosis. In fact, I asked my surgeon multiple times if it could be related to my endometriosis, but he basically told me I was stupid. I didn’t know what I was talking about, and I should let the doctors do their job without interference. He knew what he was doing and what he had found. I had no choice but to accept his conclusion. But I did beg him that should he find out the problem was endometriosis-related he would take my uterus. I was done with the pain and misery. Little did I realize that I had yet to know what real misery is.
It was not a carcinoid. It was an endometrioma or chocolate cyst. No, he did not take my uterus out! He told me it was not his job. I needed to see a gynecologist and have another surgery. This was after recovering from partial bowel resection. The recovery had taken over two months and had been excruciatingly painful. And here he was talking about another surgery in the same are! Are you kidding me?! I became hysterical, crying violently. Sobs that wracked my body with spasms that left me devoid of all hope. The horror was not over! So my endometriosis journey now took a new turn, one in which I was supposed to find an endometriosis specialist in my area. Now, perhaps things have changed, but back then, there really was no such thing as a specialist. No one! Gynecologists after gynecologists offered no solutions, just more excruciating exams, more miserable tests, and all to tell me the same thing — I had endometriosis.
A year later, to remove an endometrioma from my diaphragm near my aorta this time. Though they continued to deny me a hysterectomy, the medical profession did offer me another miserably painful solution. More surgeries to clean up endometriosis from my pelvic area. And, Lupron, wonderful Lupron. After going from 140 pounds to 170 in less than two months, I also had to endure hot flashes, night sweats, increasing exhaustion, horrible diarrhea, breast tenderness, cystic acne, crippling muscle pain, vaginal dryness, dizziness, memory loss, and depression. Yet, I was supposed to be happy that at least I wasn’t in pain and could go through Lupron shots for six more months. After that, it was not recommended because I could develop secondary male characteristics. Wonderful! Another gynecologist, one that sent me to yet another fertility expert to tell me that I was sterile like I hadn’t heard that enough, said she would give me the hysterectomy I wanted if, and only if, I went to for one more consult. So I was stuck. I didn’t want to see another fertility expert, but by then I was married. So off I went…
Surprise! This fertility expert didn’t have the same answers as the others. She actually gave my husband and I hope. She said with her help, I could get pregnant. Her help — and $30K. Insurance would not cover a single thing until I had a positive pregnancy test. I was supposed to be happy I had kept my uterus against my will. I wasn’t. But I was happy that I would be able to have babies. And, babies I had! Two beautiful twin girls!
But, you got it. Less than a year later the pain and misery returned, menstrual bleeding that had gone from 3 days to 7, was now sometimes 12 days out of the month. And when I was not lucky, 15 days. I was left weak and exhausted, the digestive problems had gotten worse, and now I also had constant back pain that never let up night or day. The difference was that unlike before, I had two babies I needed to take care of. So back to another so-called gynecological specialist.
This doctor offered me a birth control vaginal ring that rather than removing every 28 days, I was supposed to just swap for another for three months in a row. So I was only supposed to have a period once every three months. According to him, it would help with the pain. It did not. And, it turns out that once again I had just swapped one misery for another. Imagine your worse case of PMS but instead of lasting a week, it goes on for three months.
So I jumped at the opportunity when a new gynecologist offered me an IUD device that was supposed to help without the PMS side effects. Once again my weight went from 140 pounds to 170, this time in 30 days. But after one year of using it, the only thing I had to show for it, was a frozen pelvis. Yes, believe it or not, it’s a medical term that describes advanced endometriosis, encompassing the forms of deeply infiltrative endometriosis. What the hell that does mean? Well, this aggressive form of the disease is inclusive of all extreme endometriosis presentations plus unusual deep infiltrative attachments to the outer limits of pelvic ligaments, nerves, and muscle tissues. It can be partial or total frozen pelvis. I got lucky — I got a total frozen pelvis.
Now this new gynecologist who had denied me a hysterectomy for several years was insisting that I had to have one. Yesterday, if at all possible. But was he kidding me? My babies were only 4 years old? How long would it take me to recover? We were living in the middle of nowhere. Five hours from a major interstate. I hardly knew anyone in our new town. We had no family there. Who was supposed to help us? And, what if something went wrong? How was my husband supposed to take care of two toddlers? It was challenging enough for me. It was hardly a surprise that the doctor had no answers. He just looked at me and said, “Well, this is what you need to do, and you need to do it right away. You’re going to have to figure all of the rest out.” He said this as though he was suggesting I was missing a carton of milk in my refrigerator and I could just pick one up at the nearest grocery store.
I don’t know how it is that I don’t hate doctors. But I don’t, actually. I’ve had some wonderful doctors since that last gynecologist who was no help at all.
Tune in next time, for episode 8, to find out how I got through this incredible endometrial journey.