It seems almost like clock work that my body goes nuts every summer. Maybe it’s the heat, maybe Mercury is in retrograde and my chakras aren’t aligned, maybe it’s a coincidence, but really it’s just life with a chronic illness.
So where have I been and why haven’t I written a post in over a month?! May and June were both really hectic times for me at work. Usually I blog on my downtime at home and honestly, after a very long day of working on a computer, I didn’t feel like writing some blog posts during my down time. I needed to not think and just have some mindless binge sessions and lots of sleep.
Towards the end of June, I had a painful day that I associated with Crohn’s Disease because you know, if my stomach hurts that’s typically the reason. When it got really bad I went to the ER for pain relief and after a CT scan, I was informed that I had an extremely large ovarian cyst. Now, my gynecologist had been monitoring this for the past year with outpatient ultrasounds and in May he told me that it was getting bigger and we would need to have more tests done and think about removing it.
Ovarian cysts are common for women and are usually harmless. I’ve had them off and on for years, but they’ve never been a problem. They tend to go away on their own. When they don’t, doctors intervene and surgically remove them with a simple laparoscopic procedure. With my complicated surgical history and less than stellar abdominal anatomy, my situation becomes a little bit more complicated.
My gynecologist would normally perform this procedure, however, he said my case needs to be handled by someone more equipped, a gynecologist oncologist, even though it’s not cancer-related. I can’t tell you how much I appreciate a doctor admitting that they need help. I spent the 4th of July weekend in bed drugged up on pain meds. Ugh. The situation was not improving. I had some follow up appointments scheduled, but in the mean time, I was suffering.
I attempted to go back to work and it was a terrible day. No one was surprised that I ended up back in the ER the following day. I’ve been going to the same hospital for the past 8 years, all of my doctors are there and it’s great because they can all access my medical records and see my history. When I was in the ER for the second time I was informed that they did not have a gynecologist oncologist on staff to help me. WTF? I started to cry because I was going to have to find a new specialist and then try and get an appointment, which can take weeks, if not months! However, the ER doctor had been talking to my gynecologist who said he was going to find a doctor that could help me that day. By the time I got home my doctor called me with the name of a gynecologist oncologist who was about an hour away from me, but was waiting to see me that day! Um, that never happens.
I made it, with the help of my mom, to the new gynecologist oncologist. The thing about seeing a new doctor is that you have to give them your entire medical history and you’re not sure what you are getting into in terms of how they treat patients and bedside manner. I don’t like change when it comes to my doctors. The GO (gynecologist oncologist) was great and had been informed of my complicated history. In fact, my gynecologist is the one who trained him. I was in good hands. He explained my options. They could operate to remove the cyst, start with a laparoscopic surgery and open me up if it was needed, but he wouldn’t know until he got in there. Recovery time from a full incision is about 4-6 weeks and extremely painful and difficult. When he examined me he noticed my colostomy, which he didn’t know I had. This changed everything. Surgery was going to be very complicated. I’m pretty sure this is where the tears started to build up in my eyes.
The GO then gave me another option. A radiologist could attempt to drain the cyst with Interventional Radiology (IVR). They would basically stick a needle in my abdomen to reach the cyst and drain the fluid. This sounded like a much better idea than cutting me open. Again, there was a possibility of this not working, but it was worth a shot before we put me on the operating table. The GO said he would have his office try and schedule it as an outpatient in the next few days, however, if the pain becomes intolerable, just go to the ER at the hospital he works out of and I could be treated as an inpatient.
The next day I was back in the ER, but at the new hospital. It was so weird, not knowing where anything was, nothing about me in the computer. I had some of my test results on my iPad and showed the medical staff in the ER. At about 2:00 a.m., I was finally in a room and drugged up to be kept comfortable.
The IVR team doesn’t work on the weekend so I had to wait until Monday to have the procedure. They sedated me to keep me comfortable and when I woke up I had a drain on my lower left side. Flashbacks to my first surgery, where at one point I had four drains in my stomach. Gross. PTSD. Two days later they removed the drain and sent me home.
I’ve been exhausted from the entire ordeal, but happy that they could find a better solution to the problem than surgery. Unfortunately, the cyst is still there, just not as large. I basically had a large mango sitting on my ovary and crushing my bowels. They removed over half a liter of fluid, yikes. The cyst was almost 14 cm and after being drained it was down to just under 5 cm. For reference, an ovary is on average 3-5 cm. It’s still something to monitor.
I’m back in the swing of things, slowly, and preparing for a big move. Big changes are happening in my life and it’s nice to have some happy milestones amidst the crazy. For example, I signed the lease to a new apartment with my boyfriend in the ER. I have to laugh at that. This big and exciting moment in our lives happened in the waiting room of an ER. This is life with a chronic illness, you just make it work.