I can't remember a time where I have been more frustrated than I am right now. And while I've been trying to hold it in and be positive, some days it's a losing battle. Last Monday, I had my second surgery in a year. An exploratory laparoscopy to see if the source of my pain could be found. Needless to say, I was apprehensive. About the pain, the process, the recovery, the very real possibility that nothing would be found and that I was doing it for nothing. But I recognized that I couldn't just do nothing, so I sucked it up and stumbled through the best I could. Imagine my frustration then at waking up after to hear "Well, you have a very angry and inflamed uterus and ligaments. But we don't know why, and we did nothing about it". At MY request, I was given two weeks of antibiotic in case it was some kind of infection or chronic PID. And then I was sent home with a follow up appointment in 6 weeks while she conferred with my other pelvic doctor in the meantime. In a way, I did do it for nothing. I know that I actually didn't, as it doesn't show up on imaging tests and now I can prove to people that I'm not crazy and there is something wrong. But it sure feels like this was more trouble than it was solution. And are the antibiotics working? Of course not. It's been a week of two, and maybe I'm just not giving it enough time. But I've been on antibiotics in the course of this year and it's never gone away. When I first started having this pain a year ago, and presumably whatever infection or event that caused the decimation of my fallopian tube, my tube probably looked like this. Inflamed and angry, and then too damaged to save. So is that what we're waiting for to do anything about it? For my uterus/ligament things to get so damaged that they just have to take them out? I'm supposed to give it more time, more time to heal or fix itself. But it's had a year and hasn't done it yet. And there's no reason, no cause, and therefore no assurance that it ever will. I have ovarian enlargement that probably means polycystic. But they aren't all that concerned about that either.
The last month or two, my digestive symptoms have gotten vastly worse, and new ones added in. I've had the nausea, vomiting, and fatigue the entire year I've had the other problems. But now it's so hard to eat that I just don't anymore. Either because my stomach cramps so badly that I have to stop, or my stomach distends so much that I get short of breath, or I'm full after 3 bites. I'm plagued by nausea 24/7, intermittent vomiting, unexplained rashes(I've had those the full year also though), swelling of my hands and feet, chills and sweating, and a host of other intermittent things. I've lost 11 pounds in the last month without trying, I've tried every drugstore remedy, tecta, proton pump inhibitors, eliminating the "trigger" foods like soy and dairy and gluten. I'm on constant prochlorazine or maxeron for nausea, now buscopan before every meal to keep my stomach from cramping, antibiotics, opiods for pain, codeine for pain, medication to help me sleep, low grade antidepressants that block nerve pain signals, birth control pills to keep ovarian cysts from growing, and all of the OTC meds that give me some relief.
I'm 24 years old, and I'm expected to just take this all and deal with it. Expected to alter my life so that it fits what I'm able to do with all these things happening in it. To accept "I don't knows". I'm expected to have a procedure almost monthly, surgeries, colonoscopies, endoscopies, MRI, CT, labwork, breath tests. To see specialist after specialist who give me no solutions. I see the gastroenterologists next month and if they fail to find a solution, I see immunologists and so on and so forth. And I still get to see the Tom Baker in 9 months to make sure no cancer has grown. I've spent a year of my life like this. With no end in sight. I know that I'm supposed to think positive and do the best I can. But I also know that I can't have a career if I have to keep missing work. I can't focus on school if I'm focused on symptom management. I can't train as an athlete if I can't eat. I can't compete if I'm on all these medications. I can't be that fun person that my friends want me to be. And I can't focus on healing if I don't know what the problem is. All I'm able to do now is manage. Manage life, manage symptoms, manage energy. I'm 24 years old. My life should be in its prime. Exciting, driving, building. It's unbearably frustrating to see that totally slipping away some days. And I realize, for all I complained about it, I was so incredibly fortunate to have the life I had before. I'd give much to have it back.
