By Jen.
You may or may not have noticed some major time gaps between our visit to Arches NP and our last post, which may not surprise you. We had said that we needed to stop and start applying for jobs. But, the other more major reason for it was that I was in pain. A lot of it. The pain started in NZ. Some days, I could barely even walk. The pain was bad enough that when I look back on pictures of the North Island, I think, “Yeah, that was cool, but all I remember is so much pain.”
WARNING: The following post mentions much about the female reproductive system. I believe that every human should understand about this, but it is your choice whether to read on. You will not be condemned by me. This is a travel blog and this post has little to do with travel.
It started off in December 2017 with increasingly worse period pain. Then, starting in April 2018, I got infections every 2 weeks. This resulted in a lot of lower-abdominal pain. My sister, a nurse, suggested perhaps it had something to do with my IUD. After some research, we began to wonder if it had gotten embedded in the uterine wall or something like that. So, unable to take the pain any longer, I tried to get a NZ doctor to remove it. After a day of calling, I finally got into a doctor that didn’t mind that I was a “casual” patient (a term in NZ for someone not registered with your clinic). The doctor couldn’t identify if it was in properly or not, so she recommended me to a specialist (one of the doctors I couldn’t get into before). He saw me immediately, did an ultrasound and said that it was properly in place. Said it was probably endometriosis and not the IUD. However, I felt it was time to have it out, and he removed it for me. Within 2 hours, the debilitating pain I had had nearly constantly for 2-3 months had stopped. I could walk again! I thought I was home safe.
However, this was not the case. Two months later, I experienced another infection. After researching some more and realizing more than 3 infections a year wasn’t normal, I realized I should see a doctor. My doctor didn’t think much of it, gave me a prescription, and sent me on my way. This one just really wouldn’t go away, though. And, soon seemed a bit more complicated and seemed to spread. When I approached my doctor again, she said it was out of her scope and said to see my PCP. I hadn’t had a PCP in years. So, I tried to find one. No one was available for weeks or months. I needed help now. So I finally got into one via the online back door. I don’t think I was supposed to be able to do that. She looked upset the entire time I was in my appointment, as by then I had multiple, seemingly-unrelated symptoms. As a result, they ended up charging 3X what they originally charged me for the appointment! Basically, she said if I had insurance, she would run a bunch of tests (that didn’t seem likely to be the cause). Another prescription and I was sent on my way. We found out a couple of months later that the reason was that she was trying to avoid taking on new patients and planning on leaving that hospital.
While the pain was annoying, I felt like I could handle it. I figured I would just try to wait it out until we got a job and insurance. So, we started applying. Nothing showed up and my pain suddenly got worse, including debilitating pain by my ribs. I remember trying to talk with a insurance specialist while the pain was flaring, and breaking out in a sweat, trembling, and barely able to focus on the conversation. Jonathan came in from a run and had to take over the call while I took pain medicine and laid down. That was scary, so we decided that we couldn’t wait until jobs/insurance and that we should try to take care of this now and make sure I wasn’t dying. This was November.
We immediately started figuring out what insurance we were going to get and found help through Derby Insurance Solutions. Katie there had some innovative ways to get us insurance, and it was available to start 12/1, instead of waiting until the new year. That was wonderful! But, even before the insurance kicked in, we had to get some tests done to make sure I wasn’t dying. So, I paid for an abdominal CT scan with contrast out-of-pocket. I don’t get why insurance will pay 1/5th of what I paid when I didn’t have insurance! How does that make sense?
The CT revealed some anomaly by my appendix (previously removed), and partial ankylosis of bilateral SI joint inferiorly. My medical-student brother-in-law thought my colon looked a bit weird, but nothing of note that showed why I was in so much pain. The doctor then scheduled an ultrasound and HIDA scan. They took forever to schedule them, so when they finally called me I assumed there must not be a rush, and I asked that they be scheduled in December when my insurance went into effect. Over Thanksgiving, I was miserable and at my worst. I could barely eat, so I was on a clear liquid foods diet followed by a soft foods diet. Swallowing hurt. And I was just being wracked with pain. I couldn’t identify a cause. It slowly got a bit better, but still wasn’t clear what was going on. In mid-December, I switched from St Johns to St Francis, which was a really good thing, and I started to get some answers. My new PCP wasn’t scared by my multiple symptoms, got me referrals, etc. It did help that I finally had some insurance. The HIDA scan and ultrasound came out normal.
Finally, on 1/4/19 I had an EGD and colonoscopy. My colon looked weird because it was "overly redundant" or super long. My upper abdominal pain was caused by (grade C) esophageal ulcers as a result of acid reflux. Plus, it didn’t help that I had been popping ibuprofen like a child does candy over the last year. I was shocked. I hadn’t been aware of any reflux before. In fact, my doctor wasn’t expecting it at all. He threw in the EGD at the last minute in the consultation. Looking back, I finally realize that because of the infections, I had changed my diet to reduce sugar and carbs. As a result, I was consuming a higher-fat diet, which brought on the reflux. In fact, an episode last month made me realize I have always had reflux, but it presents differently in me, and typically only when I substitute high-fat snacks in place of meals. It also feels more like uneasiness and sourness in my stomach (upper abs) than it does like most people report reflux (burning). It was quite eye-opening for me.
Another ultrasound revealed I have varicose veins around my uterus and a uterine fibroid. Both of which can cause pain, but not the pain I was feeling. So, we agreed to diagnostic laparascopic surgery. As expected, I had endometriosis, which is present in 70% of women who have chronic pelvic pain lasting more than 2-3 months. I had definitely met those requirements. In fact before my surgery on 2/22/19, my pain levels were getting to the point that I could barely do basic tasks again. Jonathan had to pick up doing the meals and cleaning up. During the surgery, they burned off what they could see, except for in really sensitive areas, like my ureters. It isn’t all gone, and the doctors here aren’t educated on how to properly remove it or spot it even. So, in all likelihood, I will have to go through this process again. But, at least now we have some answers.
What frustrates me is that I have had symptoms and pain all my life that we could have regulated or controlled, but nobody told me that it wasn’t normal. None of my doctors asked about my pain during my checkups. None of them suggested it was abnormal. Ladies, your periods shouldn’t debilitate you. Yes, they will be painful, but you should be able to take some painkillers (acetaminophen or ibuprofen, etc.) and be ok. If not, you probably have something else going on. Fevers are not normal. Pelvic pain at any time (other than when menstruating) is not normal. You don’t have to have heavy bleeding to have evidence of endometriosis. Everyone is different. If your doctor doesn’t take your complaints seriously, find another doctor.
Really, the spots of endometriosis they found were really minor. I was only at stage 1 (maybe halfway to stage 2), but was in so much pain. I felt like the princess and the pea story. I have always hated that story, and I hate being compared to a princess, but I do feel like those few small dots were so very painful. There was quite a change from before and after my surgery in regards to pain. But, it didn’t take care of all it. Right now, I am working with a pelvic-floor physical therapist. They are amazing! They are reducing my restrictions and pains with just a weekly visit and some exercises. Amazing what diaphragm-breathing can do! Also, through them I learned that urinary incontinence or leakage is not age-related or pregnancy-related; they normally can very easily fix that. I don’t have those specific problems, but I am letting people know so they can find some relief for themselves. I highly recommend pelvic-floor physical therapy.
Through this all, I have had great support. Of course, family and friends have cared and tried to get me help, but most of all I have had amazing support from my husband. He picked up the tasks I could no longer do myself. He helped me figure out when to go to the doctor, or when to wait it out. Instead of pitying me, he just accepted me as I was and didn’t make me talk about how poorly I was feeling. But, he also listened when I griped about the pain. He drove me to my doctor visits and helped keep me honest about how much pain I was feeling (I have a tendency to down-play this stuff). He insisted on getting me the appropriate care. I really truly have a treasure of a husband.
