I had an 82-pound giant ovarian cyst that resulted in surgery to remove it along with a total hysterectomy. Here’s what life was like for the six days between diagnosis and when I went back to the ER where I was basically bedridden.
If you’d like to start at the beginning with my experience of having an 82-pound giant ovarian cyst you may want to go to my first post in this series where I talk about my symptoms that made me go to the ER in the first place.
In August I went to the ER and was completely surprised by the fact I had a giant ovarian cyst – so giant that it was about 1.4 feet long.
Being self-employed this really hindered the amount of work I could do while waiting for surgery and a lengthy recovery afterward, plus an uninsured $4,000+ ER bill from my first visit and insurance is trying to fight paying a $3,200 ER bill from a complication the nurses line told me to go to the ER for so I am sharing my GoFundMe page a friend set up for me and appreciate any and all donations and shares.
Table Of Contents
This is going to be a rather long series so I thought I’d include a table of contents if you’d like to check out certain sections, especially as I continue to update as my experience unfolds.
Please note that some photos may be uncomfortable for some to view. I don’t show any boobs or privates but will eventually include photos of my CT scan, surgery, incision, and bruising and skin.
- GoFundMe Details – This whole life event has severely impacted my income being self-employed so I’m asking for help here.
- What Made Me Finally Go To The ER
- The First ER Visit And The Worst Pain I’ve Ever Experienced
- Life Between The First And Second ER Visit (This Post)
- Back To The ER, Waiting For Surgery And Being Scared (Hopefully Not) To Death (Coming Soon)
- Wait – It Was How Big?! (Coming Soon)
- Yay – I Can Finally Eat Again! Nope, Spoke Too Soon (Coming Soon)
- A Sigh Of Relief Amidst All The Chaos (Coming Soon)
- The Tube Is Out And Have You Pooped Yet? (Coming Soon)
- After What Feels Like Forever I Get To Go Home (Coming Soon)
- Happy Tears And Why Losing So Much Weight So Quickly Isn’t Fun (Coming Soon)
- Realizing My Post-Surgery Limits (Coming Soon)
- A Third ER Visit – Something Foreign Is Growing Again – Really?! (Coming Soon)
- A Month Post-Op (Coming Soon)
- Happy 33rd Birthday – Hopefully This Year Will Have Fewer Surprises (Coming Soon)
- Questions I’m Often Asked (Coming Soon)
- Others’ Experience With Ovarian Cysts And Tumors (Coming Soon) If you have your own story you’d like me to link to or include please send me a note at [email protected] or leave a comment on this post.
Being Bedridden Because Of A Giant Ovarian Mass
In my last post, I had just been discharged from the hospital after finding out I had what ended up being a 1.4 foot long and 82-pound giant ovarian cyst.
I had been struggling to get around already, which is one of the reasons I went to the ER to begin with. But, after that, I became pretty much bedridden.
I don’t know if all the moving and having to be on my back for imaging just put too much stress on my body, the mass was continuing to grow, or that I was just exhausted physically and mentally but I just had no energy. Probably a mix of all of the above.
At this point, I couldn’t even make it up the stairs anymore. I was just too weak and tired.
This was rather scary to me being only 32. Being overweight and having knee issues since I was a kid, stairs were never my friend but I had never experienced anything like this before.
I remember the night before I went to the ER I almost didn’t have the strength to make it up the last two stairs. It still amazes me just how much the ovarian mass was affecting my circulation and such.
So, Mr. Savvy went and got another bed to put downstairs and that’s pretty much where I stayed the next week with a couple of exceptions.
Thankful For A Health Insurance Option
We have lived together for 10 years now but never got married. Since I didn’t have health insurance being self-employed we decided to get hitched after Mr. Savvy confirmed with his work that I would have insurance backdated from the marriage date.
We knew I’d likely be in the hospital a while with such a major surgery. We also knew that with how things are with health care in the states that I would likely get better care having insurance.
And there was a chance I could have cancer and need further treatment. Along with likely needing a lot of followup care either way.
Short-term insurance was very high cost and yet didn’t even cover prescriptions at all. It may not have even covered things to do with my surgery since it could have been seen as a pre-existing condition at that point.
So we went to get a marriage certificate the day after my ER visit. I knew it was going to be tough on me because, as I’ve already mentioned, I was extremely exhausted and could walk minimal distances before feeling like my legs were going to give out.
But, we wanted to get it done as soon as possible in case I had to go back to the ER because of further complications of my condition. Mr. Savvy was, of course, running late because of work but we managed to get there just before the courthouse closed.
I tried to go up the stairs to get inside more quickly but now even just one stair had me in immense pain, something that hadn’t happened before. He went ahead inside since they were about to close to get things going while I walked around to go up the ramp.
I had to sit on the bench outside the door for a minute before even going in because my legs were so tired. I eventually made it inside and through the metal detector.
I started walking back to the license area and my legs just froze. I’m barely able to move forward and have to brace myself against the wall and luckily don’t fall.
Luckily, the ladies at the entrance saw me struggling and got me a wheelchair. It was a rather embarrassing experience for me and honestly scared the sheet out of me.
I was worried now what lasting damage I may have from my giant ovarian cyst and if I would even be able to walk properly again.
I was so thankful that everyone was very nice and willing to stay behind a few extra minutes after closing to help us get the license completed. We didn’t even chance me trying to walk back out and used the wheelchair.
This is a photo I took of my abdomen right before I went to the ER the first time. You can see just how large and rounded my abdomen was. It was growing more and more rock hard. You’ll also notice you can’t see a belly button. This area had grown so big that it pushed my belly button way down below my waist. It’s kind of hard to see as I took this photo in the dark with flash on my phone, but the arrows are pointing to various huge veins that were becoming more and more visible due to the mass being so large which scared me as that can potentially mean your blood isn’t flowing as well as it should. At the time I didn’t really have any noticeable gynecological symptoms and thought this was ascites from my liver or something.
Even being in the car for the one-hour round trip was painful now. When we got home I opted to go in through the front door instead of the garage because that step wasn’t quite as steep.
I still needed the help of Mr. Savvy getting up it. It amazed me just how much of a difference this was from just 36 hours ago when I was making it up a whole flight of stairs, albeit slowly.
I spent the rest of the day in bed, only getting up to walk around a bit every couple of hours so I wouldn’t get clots and to go to the bathroom. Mr. Savvy wouldn’t let me do much more anyway because he was afraid of the large ovarian mass bursting.
Mr. Savvy took the next day off and we thankfully found a wedding officiant on short notice. We luckily got there just in time before he was closing up for the week and going on vacation.
There were more steps, but I thankfully made it up them and didn’t collapse during the ceremony. It was comforting to know that if anything went wrong while waiting to see the surgeon I at least had health insurance now.
Waiting To See The Surgeon
As I mentioned in my previous post, I wasn’t scheduled to see the surgeon for a whole week. Sometimes they’ll do surgery the next day, but knowing how busy and in demand, Dr. Irvin is I suspected I wouldn’t be quite so lucky.
Mr. Savvy and I discussed several times about whether I should just go back to the ER that weekend because he could tell how miserable I was.
When we called the doctor’s office they said he was out until the following Wednesday.
We decided that waiting for Dr. Irvin would be best because he was obviously awesome at his job and since this would be no small operation (pun intended) we didn’t want to take any chances.
The next several days were long since I couldn’t do much other than watch TV and do what little work I could from my laptop and phone.
All while worrying about if I had cancer or all the potential complications of such a major surgery while at the same time hoping nothing major went wrong before then.
It wasn’t very comforting when one of Mr. Savvy’s coworkers that was a nurse said I shouldn’t lie on my right side because I could be doing damage to myself. Especially after my CT scan had already said that the giant ovarian cyst was compressing some of my arteries.
I couldn’t sit up very long without having immense back pain, so I was lying on my left side most of the time.
While spending the day in bed at some points in life has sounded amazing I can confirm that spending several days like that is not so fun.
I was glad I at least worked for myself in the sense that I probably would have been fired for having to miss so many days. On the flip side, it would have been very nice to have some sick or vacation days to use.
As the days went on I was getting more and more miserable. The “bloat” I had from the mass seemed like it was getting harder and a bit bigger every day and I just could not get comfortable at all.
There were so many times I wanted to just go back to the ER and get everything over and done with. It’s definitely not fun to sit around with thoughts of wondering if cancer is continuing to grow inside you or that something else in your body is going to be permanently damaged.
I tried to not think of those thoughts too much. I knew I needed to focus on getting through the however many days until the surgery and then recovering as best as I could until we got the official results.
It wasn’t always easy, though. I tried to distract myself as possible and spent as much time with the cats as I could.
Mr. Savvy grew increasingly worried about how miserable I was. And honestly, I was too.
I was vomiting stomach acids more than ever, not really eating at all and barely even felt like drinking water. My heart rate seemed to be all over the place, I couldn’t breathe very deeply, and the pain was obviously no fun.
It was honestly even exhausting just walking from one end of the house to the other and back when I had to go to the bathroom. I was getting more and more afraid that I might unexpectedly fall and really hurt myself.
I think the only things I actually ate for the six days before I went back to the hospital were a milkshake mixed with protein powder, a protein shake, and some pho broth. That’s seriously all and I didn’t even feel like eating that much but wanted to try to keep what little strength I had.
Between all of this, we also had problems with the insurance. First, the courthouse thought that the marriage officiant stamped the paperwork instead of actually signing it.
They didn’t want to accept it at first but eventually did. Then Mr. Savvy’s work said my insurance wouldn’t start until the next month.
Thankfully after a lot of back and forth, they agreed to backdate the insurance because he had written proof from one of their employees saying it would start immediately. They said that since he had that, they had no choice but to honor it.
This is a profile photo taken the day before I went back to the ER since I could barely move anymore. You can notice that my bra strap won’t stay up. I hadn’t realized at the time that I had actually lost a lot of weight which is why my shirts would be tight around my abdominal area but very lose around my neck and arms. I had no idea at the time that the mass actually weighed 82 pounds – accounting for almost a third of my weight at the time.
Feeling Like I Can’t Do This Anymore
Since my symptoms were indeed getting worse, we decided to go back to the ER early the Wednesday before I was supposed to meet the surgeon on Thursday.
I felt like I just couldn’t risk living like I had been the past week anymore and was super worried about my breathing and circulation as I was bruising super easily.
We hoped that by at least waiting that long I could still have the surgery done by Dr. Irvin and hopefully not have to wait several days for surgery.
So, we headed back to the ER around 3 to 4 AM again. I barely slept before we went between being so uncomfortable and anxious about everything.
I was very scared about the surgery but also eager to have it done and hopefully get my life back.
The next post in my giant ovarian cyst experience series will be about the second ER visit, what happens when they can’t get an IV in your arm, actually meeting the surgeon, and getting ready for surgery.