A New Lease on Life

For years, I have been dealing with crazy health issues that were essentially inexplicable. I have seen no fewer than ten doctors, each of whom gave me a different diagnosis for various symptoms but were unable to identify my problem as a whole. I always had a firm notion that they were all related, but no doctor agreed and at some point, would become a bit irritated with me. I could tell that by the third or fourth visit, they really just wanted me to go away. So, go away I did each time, growing sicker and sicker and ever more hopeless.

I remember exactly when I began to feel the first twinges of pain in my right side. It would shoot in like lightening then go away as quickly as it came, only to shoot back in after a few minutes. It felt as if a little gnome were living in my gut and stabbing me with a tiny knife, just for kicks. I didn’t have a clue what it could be and headed off to my family doctor who sent me to the hospital for an ultrasound on my gall bladder. Everything checked out just fine. But the pain kept coming and with it, I also developed a tightening in my tummy whenever I ate and a nagging cough. So, off my doctor sent me to my first Gastroenterologist, who promised we’d get to the bottom of everything with a colonoscopy and endoscopy. However, both tests came up completely normal, aside from a small hiatal hernia.

I was then sent for a hydascan on my gallbladder which, you guessed it, came up completely normal. Then a CT scan, which showed nothing was amiss. My GI doctor then prescribed several different acid reducers and sent me on my way. Well, none of the medicines fixed my issues. As a matter of fact, they made me feel worse. The pain in my side was now rearing its ugly head more often, along with some nasty stomach and gut bloating. Frustrated, I made another appointment with the GI who was none too pleased that I did not want to take the PPI’s. He threw his hands up and suggested that having my gall bladder removed might solve the issue, but that it was only a 50/50 chance. I thanked him for his time, got in my car and said, “Peace out, doc. I shan’t be back.”

I began researching absolutely everything I could find that might explain my symptoms. If it’s not a GI issue, perhaps there’s a chance it was gynecological. I did notice that my bloating was much worse around my cycle, which wasn’t totally odd since my periods had been brutal since I was 12 years old. So, I figured, ‘what the heck?’ and made an appointment with a new GYN. He was super considerate and wonderful and suggested an endometrial ablation for my pain and bloating, which would also help my periods get significantly better. I had no idea if this was the cure to all my woes or not, but I agreed and had the procedure done. It took me longer than usual to heal up and my bloating only seemed to get worse, not better. And, even though my periods were extremely light now, my pain was intense, putting me in the bed for the first day or two of my cycle and even shooting down my legs and around into my lower back.

I went back two or three times to try to see my GYN, but he was hardly ever available, so I saw other doctors and nurses who explained to me that I was just fine. I was even told by one that “all women feel pain. You are not out of the ordinary.” Once again, my frustration level was sky high, and I was getting more and more desperate.

I now turned to integrative doctors for tests that were outside of the box. I had every blood, spit, urine, and stool test available and came up with diagnoses of candida overgrowth, SIBO, a plethora of vitamin deficiencies, low levels of good bacteria in my gut, low thyroid, and virtually no testosterone. All of these issues were valid and treatment for them did help some of my issues for a time. But just as soon as treatments stopped, my symptoms would make a triumphant return, leaving me even more miserable than before. At this point I had developed bloating almost every time I ate, relentless constipation, excruciating period pain, and tightness in my stomach that was so extreme I had to stop wearing bras. Needless to say, I was angry, angrier than I had ever been in my life. Angry that this was what my life was going to be like now. I mean, if I were just fine a few short years ago but now every year brings more issues, more pain, more crazy diagnoses that can’t be fixed, how am I going to feel a year from now?  Five years from now? Ten? 

I stopped seeing all doctors. I wasn’t angry at them, per se, I was just done with no one able to truly help. I gave up. I stopped taking any supplements, stopped taking thyroid medicine (it never worked, anyway), stopped researching, stopped everything. I gave in. Needless to say, I continued to get worse and grew accustomed to being bloated and in pain. I was in a bad mood all the time, and my poor family suffered because of it. Thinking back on all that I went through, that causes to ache the most; I lost my temper constantly with my kids and husband and was not myself. Pain has a way of changing you. It’s terrible. I simply was not in my right mind any longer.

It got to the point that I was in so much pain, I couldn’t function. I would be in bed with a heating pad for hours at a time and ate hardly anything with dairy, gluten, sugar, corn, or any other inflammatory food. Even many fruits and vegetables blew my stomach up. Sometimes, it just wasn’t worth eating at all. The pain in both my sides, my upper stomach, my back, and down my legs was insane. It was coming so often now that I stopped making plans with friends, stopped working out, stopped teaching art classes, stopped volunteering at school. I just stopped.

It was then I started to see what I had missed before – a pattern. I felt bad all the time but I felt MUCH worse when my cycle came around. That’s when I was truly in bed practically all day long. A little bit of my old ‘let’s fix this’ fire hit me again, and I decided to try one more time to see my GYN. As fate would have it, he was on medical leave so I did what any other rational 21st century, desperate person would do when she needed medical help, I put a plea out on Facebook for recommendations for a great GYN (for real).

Most people thought I had misspelled ‘Gym’ and I got about a million suggestions for great places to work out, so if you need one, I got ’em. But between all the YMCA and Gold’s Gym posts, two ladies privately messaged me to tell me about doctors they loved and why, and all about the GYN issues they had been dealing with for years called endometriosis. I read everything they wrote and about lost my breath. They were describing my pain, my bloating, my issues with food – pretty much everything. I delved into researching what endometriosis was and found myself elated and hollowed out at the same time because this disease, if that were truly what was causing my turmoil, is not curable without a full hysterectomy (which I had been avoiding for years. MY uterus was surviving on borrowed time). Still, my friend urged me to see her doctor who had helped with her endometriosis pain, and since I had grown pretty desperate for relief, I did.

My new doctor was super sympathetic to my pain. He suggested that there could possibly be some complications I developed from my ablation (he was right) and that there was most likely some endometriosis (right again). Like the other doctors, he was doubtful that my gastro issues were linked to my feminine issues, but he didn’t dismiss it completely. After an ultrasound revealed some nasty problems with one of my ovaries, we settled on a hysterectomy and set the date (I cried, which was super embarrassing because I am NOT a cryer). Fast forward another month, and my pain had grown so severe that I was taking a ridiculous amount of pain killers a day (which never even took the edge off), lying in bed most of the day, and eating only soft foods due to the additional pain of my awful constipation. The middle of the night was the worst of all, as I would wake up with stabbing pains in my gut and back, if I had gone to sleep at all, which I didn’t do much anymore. I’m not being dramatic when I emphatically say that life was simply unbearable. Some nights I lay on the bathroom floor so I could cry and not wake up my poor husband who, I later discovered, was pretty frightened something terminal could be wrong with me. Honestly, I was getting frightened, too.

The day of my hysterectomy finally arrived. And, although my doctor continually told me I would feel like a million bucks and have a new lease on life, I was completely skeptical. After all those years feeling like death, it was hard for me to imagine I would ever feel good again, and I believed that this surgery was just something that would take the edge off, if anything at all. But, into surgery I went.

Friends, I still can’t believe it. That surgery changed my life. Other than waking up and begging for morphine (not my best moment, but surgery IS pretty darn painful), I have not had pain in weeks. I know, crazy, right? Nearly all my weird health woes were relieved by a three-hour surgery? Here’s why.

After I was in my right mind again, my doctor explained to me that my innards were in such an awful state that he couldn’t do the surgery laparoscopically as planned but had to go through my c-section scar to get the job done. Peeps, I was eaten up with endometriosis. My ovary was so inflamed by it that it was bigger than my entire uterus, which was pretty scary, if you consider that a healthy ovary is the size of an almond. Not only that, but my entire uterus was severely swollen. The endometriosis had my ovaries glued to my uterus and my uterus glued to my bladder, which was also wrapped with that evil stuff. While I was still out of it and still begging for drugs, my doc told my husband that he had no idea how I had been walking around with my gut that jacked up (okay, he didn’t use those EXACT words, but you get the point). And although he couldn’t see it on my bowels, it was there, too, which explains my chronic constipation. And, since endometriosis is a disease of inflammation, no wonder I was so bloated and in pain practically all the time.

Since my surgery, I’ve learned that endometriosis is super hard to diagnose since you can’t see it on a CT scan (I had three) or an ultrasound (I had more than you could shake a stick at). It’s practically invisible unless you go in laprascopically and see it with a camera; hence, some people call it the invisible disease. There’s no known reason as to why it grows outside of your uterus where it’s supposed to be, and onto your organs. But wherever it attaches, it eventually causes swelling and intense pain. It can even move upwards into your lungs, bones, pancreas – practically anywhere if left untreated. Scary stuff.

I’m five weeks out from my surgery now and I’ve never felt better in my life, or at least I just forgot what it was like to feel good. Seriously, I was so accustomed to pain, I didn’t realize that you aren’t supposed to feel anything. A dull ache and even a little bloating is not normal, but I just assumed it was. Whereas before, a piece of chocolate, a splash of half and half, a bit of bread would send me to bed for hours due to intense bloating and pain, I’m actually able to enjoy normal foods for the first time in many years. I forgot what simple eating pleasures were like. I very gingerly sipped on a latte a couple weeks after my surgery just to see what would happen. I was ridiculously surprised to find that I didn’t swell up at all and had only the slightest pain in my side where I’m sure the leftover endometriosis is living on my bowels. Luckily, though, that vile filth can only thrive in the presence of estrogen, which I have none of any longer, so it should die off in a matter of a few months. And fast forward three weeks later when I treated myself to another frothy cup of coffee heaven – no pain at all. Oh, glory, how can that be?

Every day, I think of my two friends who suggested I could have endometriosis. Thank God for them and for a doctor who listened to me, even though I still think he considered me a little loopy. (Probably because I was. Pain makes you seriously nutty). I’m so thankful for my husband who took care of me as carefully and sympathetically as humanly possible. And for my sweet teenage girls who forgave the raving lunatic mother who literally laid on the couch for weeks and let them eat the worst crap imaginable for dinner since I was unable to cook them nutritious meals (actually, they really loved that part). Regardless, they have their mom back.

I really do believe that the horrible inflammation I endured, caused by my endometriosis, wreaked awful havoc on my body and most likely was the reason my thyroid was a mess, making it difficult to fight off many other things. That’s just my opinion, but it makes a lot of sense. And, I’m not saying that every person who struggles with the symptoms that I did will come up with a diagnosis of endometriosis. But I am saying that you really do have to be your own advocate. Listen to your gut. Find a doctor who truly listens to you. Don’t give up. Don’t stop asking questions. Do your research.

And don’t forget, if you need a good gym recommendation, I’ve got a massive Facebook list.