Tuesday, June 06, 2017

Kelly's Surgery 6/6/17

Updates! (TMI probably for some) Sorry about that, but I want to share what I've been going through! I know that some of my friends and family have gone these things too, and for me it's nice to not feel alone in it. I'd love comments or private messages about your experiences particularly with endometriosis if you feel comfortable sharing with me!

I finally got in to see an endodontist on Monday. He confirmed that I do need a root canal, and I am scheduled to have that done after my surgery recovery. I will be happy to have that out of the way! Apparently the reason it's been so painful is that the abscess was down at the bottom of a root and putting pressure on my lower jaw bone, No pain right now because the antibiotic temporarily took down the infection and inflammation. That should hold for a few weeks until my appointment! Sensodyne toothpaste is doing a great job managing the sensitivity, so that's fantastic for me!

I had very severe abdominal pain beginning in December 2016 and reoccurring in 2017. Even before the pain started, I had already been having struggles with fatigue and other symptoms that were affecting my quality of life and ability to do things that are important to me like working, housework, running, etc. Sometimes I would be fine, but other times I was unable to do much for up to 1-2 weeks at a time, and some days struggled with just trying to get in the car to take Jana to school. I tried several medications that either had unmanageable side effects and/or didn't help. I also tried a low glycemic-index diet and a high protein diet. The low glycemic-index diet was not a good fit for me, but I did feel good when I just made sure to eat some protein every time I ate anything else.  I've cut out caffeine almost completely from my diet (for years now), and I exercise every day that I am physically able to.
When the pain happened, it was significant enough for me to get an MRI and then ultrasounds every 3-6 weeks. What was originally thought to be hemorrhagic cysts in my pelvic region began to be considered a "mass" that was actively and quickly growing. A specialist in April recommended surgery, which was an upsetting and alarming idea to me. I went in for a second opinion in May, and the second surgeon recommended immediate surgery (within a week). He also gave me the option to have the surgery done by an oncologist obgyn because the type and nature of the mass had not yet been able to be identified. I picked the obgyn who had done my c-section because I had been so pleased with the minimal scarring from his work and how much we had just generally liked him. He let me know that there was a chance both of my ovaries might have to be removed and a small chance of a full hysterectomy.
My surgery was this morning  (Tuesday 6-6-17) at 9am at PVH. Several really good things came out of the surgery. First, I got a diagnosis of endometriosis. It's bad in a way, because it's severe, stage 4 with significant scar tissue throughout my pelvis, it's not curable, and almost certain to return. However it's also good news because at least now we know what we are dealing with and what was causing the pain! Also good, because it's very likely completely benign and there's a good chance it can be managed in one way or another. I know other people who have endometriosis and live very happy lives!

Unfortunately, my doc said that this surgery will probably not help my fatigue or other symptoms (it should help with pain in the short term). I'd love to hear how others with endometriosis have managed fatigue and other symptoms!

I was pretty nervous and upset going in today. I cried all the way into the operating room and until I was under anesthesia! (Probably largely due to hormones, but also because I've been going through a heck of a lot, and I'm just tired. I also didn't sleep well last night.) The surgery was laparoscopic and outpatient. I was home by around 2pm I think. In the surgery they removed my right ovary and fallopian tube (salpingo oophorectomy) along with the larger mass which turned out to be an endometrioma.They were able to save my left ovary fortunately by removing smaller endometriomas that were attached to it. They also removed a large amount of thick scar tissue (caused by endometriosis) throughout my pelvic cavity. They also did a hysteroscopy (camera in the uterus) to look at a polyp, and they performed a D&C to remove that. My obgyn was also kind enough to remove a mole from my tummy that I'd been previously instructed to get removed (by my regular doc). So all together I got 5 incisions today! They were all small enough to be glued rather than stitched. They have really amazing laporoscopic techniques now! Fortunately I did not have any plans to wear a bikini this summer, and I don't think I'm quite ready to display my new look. Maybe that can be a goal for next summer!
Everything was sent for biopsy, and my doctor was not concerned that anything would come back with a negative report. I'm home resting. I feel exhausted and very weak, but in good spirits! I'm enjoying flowers, chocolates, balloons, popsicles, ice packs, and Percocet. My pain level is low at the moment. I am feeling loved and well cared for. I have a huge stack of books and several shows I plan to watch. I also plan to continue homeschooling from my bed. I can get out of bed and walk to the bathroom by myself (very slowly). I have requested 2 weeks off work, and my mom is here this week to spend quality time with all of us (thought the kids seem to have dibs). Matt sets his own work schedule during summer break, so the timing couldn't be any better. I will be alone for a few days next week, but I have had offers from local friends and family to help me during that time. Our homeschool community has also reached out to me with offers of help. I am so thankful to feel like I have a support network, and I do not take this for granted. Often when I have seen my friends and family struggling I have wanted to help, but haven't felt like I've known how I could help. So, a challenge I have given myself is to ask for specific help when I need it. Thank you for being a part of my support network, and I hope I can be a part of yours!

Update: 6-7-17
I woke up in a lot of pain today because I slept so well last night that I accidentally missed a pain pill and the Percocet wore off. It hurts to breathe or move today and unfortunately my shoulders are hurting very badly. My sister had this after her surgery too, and she told me what causes it. Apparently for laparoscopic surgery they have to fill up the abdominal cavity with gas so they have enough room to work. They remove the gas after, but not all of it. So the remaining gas sometimes floats up and lands in the shoulders which I think is what I have going on. It hurts even worse than the abdominal pain and pain from breathing.

I'm discouraged today because I hate being stuck in bed. I've been frustrated a few times because I needed something and no one was in my room to help me. I'm frustrated because I feel like I should be able to take care of myself, and I can't. Also the level of the pain in my shoulders is wearing me down very quickly. :(

I'd love to hear from people who have found ways to manage pain other than going crazy from it!