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I Had An 82-Pound Large Ovarian Cyst: Getting Ready For My Ovarian Cyst Surgery

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I had an 82-pound large ovarian cyst that resulted in surgery to remove it along with a total hysterectomy. Here’s what life was like after I went back to the ER and was awaiting surgery.

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 large ovarian cyst – so large 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 which I’m still working on, 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.

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.

  1. GoFundMe Details – This whole life event has severely impacted my income being self-employed so I’m asking for help here.
  2. What Made Me Finally Go To The ER
  3. The First ER Visit And The Worst Pain I’ve Ever Experienced
  4. Life Between The First And Second ER Visit
  5. Back To The ER, Waiting For Surgery And Being Scared (Hopefully Not) To Death (This Post)
  6. Wait – It Was How Big?! (Coming Soon)
  7. Yay – I Can Finally Eat Again! Nope, Spoke Too Soon (Coming Soon)
  8. A Sigh Of Relief Amidst All The Chaos (Coming Soon)
  9. The Tube Is Out And Have You Pooped Yet? (Coming Soon)
  10. After What Feels Like Forever I Get To Go Home (Coming Soon)
  11. Happy Tears And Why Losing So Much Weight So Quickly Isn’t Fun (Coming Soon)
  12. Realizing My Post-Surgery Limits (Coming Soon)
  13. A Third ER Visit – Something Foreign Is Growing Again – Really?! (Coming Soon)
  14. A Month Post-Op (Coming Soon)
  15. Happy 33rd Birthday – Hopefully This Year Will Have Fewer Surprises (Coming Soon)
  16. Questions I’m Often Asked (Coming Soon)
  17. 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.

In my previous post in my 82-pound large ovarian cyst series, I talked about how life was being basically bedridden as I waited to meet my gynecologic oncology surgeon, Dr. Irvin.

As I mentioned, my symptoms kept getting worse even in just a week’s time. So, I made the decision to go back to the ER a week later after my initial ER visit.

I couldn’t even walk into the ER this time and had to get a wheelchair. I was honestly pretty close to just calling 911 for ambulance transport.

It was kind of funny at first because the triage nurse asked what brought me in and I explained I was here a week ago and found out that I had a very large ovarian cyst. She was quick to say they don’t do follow-ups in the ER.

After explaining that I was not eating, vomiting multiple times a day and couldn’t even really keep water down, and could barely walk they took me to one of the ER rooms.

It felt weird because everyone was really, really sympathetic and looking at me with those looks of you look so miserable I am so sorry. Definitely not something I’m used to.

 

What Happens If They Can’t Get An IV In Your Arm

As I mentioned about my first ER visit I was really surprised that the nurse got a vein in my arm for blood withdrawal and an IV line on the first try and quickly at that.

I’ve always, always, always, had issues with having blood taken, etc. I thought it was because I was overweight and my veins were difficult to see or find.

However, during my hospital stay, I learned that it’s actually because my veins are apparently smaller than average and burst easily. I always knew I was unique in more ways than one.

The initial person who tried to get the IV in was, of course, my nurse. He was so sweet and I honestly felt very bad for him, especially since he said he had only been on the job for about a year.

He tried at least 3 times but it just wasn’t happening. I learned that most people seem to have a 3-stick policy.

That means they’ll try to get a vein 3 times and if unsuccessful hand you over to a more experienced person. Needless to say, at a young age I learned to not be afraid of needles or blood.

I felt so bad that he was so apologetic when it really wasn’t his fault and kept telling him so. He kept saying he was so sorry that he had to keep sticking me and just wanted to get me some medication for pain relief.

Not to mention they needed to draw blood for further testing and at this point it was pretty much the only way I was going to get medication and fluids in me.

In comes person number two. I actually remembered him from my first visit.

I think he tried about 3 times as well. Nothing. Same with the third person.

A fourth person comes in and says I’m going to try for your arm but if I can’t get it, we’ll have to put it in your neck.

He sadly couldn’t get it in my arm, but I wasn’t overly surprised at this point. So, I make sure which side I want to stay on since that’s the only way I’m semi-comfortable so the IV can go on my other side.

The last thing I wanted to do at this point was to accidentally pull the IV out once it was in. He apologized before starting saying that it will probably hurt and be rather uncomfortable.

Not to sound flippant, but I was honestly so miserable anyway I didn’t really care at that point. I just wanted to feel better and have everything over with.

Getting a neck IV was definitely an interesting experience. I basically had to keep blowing against an object while he got the IV in. I guess it helped plump up the veins in my neck.

It honestly didn’t hurt at all. I’m still not sure if my pain tolerance is just that high or my body has been in shock of everything going on.

Either way, the IV was finally in after a few hours. My nurse came back all happy that my IV was finally in, drew blood for testing, and gave me some morphine.

Sadly, the morphine didn’t do much for me. It honestly just made me feel even more tired and warm without any real pain relief. Feeling warm was kind of nice, though, since I had grown used to being cold all the time.

Getting “Admitted” To The Hospital

After all this, I saw some of the gynecological residents again. They asked how I was doing and said I was going to be admitted.

They confirmed that my pap smear had come back negative for everything but they wanted to take a look again.

So, yes, more fun trying to get up on a bedpan again. But at least they didn’t scrape anything this time and it didn’t hurt like hell like the previous time.

They also discussed that considering everything I’d be on a liquid diet but that I shouldn’t feel like I had to drink any of the things if I didn’t feel like it. I’d be getting fluids and any nutrients as needed through the IV.

Then I was moved upstairs to a real room. I had to sign a form confirming I was only there for observation and not formally admitted yet. I have no idea what that may eventually mean for insurance coverage payment.

The bed was at least a lot more comfortable and had electronic controls. I thought it was neat it even worked as a scale.

Oh, and they actually had pillows! The ER didn’t have pillows available so I had been using a rolled up towel.

I was also hydrated enough to finally give a urine sample. I was thankful to find out that there’s a pan they can put in the toilet instead of having to try to pee in a tiny cup. Sometimes it’s the little things.

Hospital Life Awaiting Surgery

The two and a half days I was in the hospital before surgery are kind of a blur for me since I was so tired and just plain worn out.

I remember at the time, though, it felt like time was passing so slowly. I was literally counting down the hours for the next day or two when I’d (hopefully) finally get this huge ovarian mass out of me, hopefully finding out nothing was malignant, and working on getting my life back.

Since I couldn’t walk very much, they put me on Warfarin to prevent blood clots from forming. I had expected to spend a lot of the time reading but I was too tired to even really concentrate and absorb what I was reading.

Thankfully Mr. Savvy was there most of the time to keep me sane and company. Otherwise, I pretty much just watched crappy TV, browsed on my phone, and went through various testing and imaging.

I also spent a lot of time talking about my condition with various nurses. Everyone was always super curious about what exactly was going on, what symptoms I was having, and for how long.

I can’t say I blame them, I’d have been super interested, too. I’m always totally open with anyone that wants to know, medical professional or not because I think more women need to be aware of symptoms that are usually ignored or blamed on something else.

I had an ECG, or electrocardiogram, done which thankfully came back normal.

They wanted me to go down to get x-rays taken and it was again confirmed that nothing is made for shorter people. They want you to change beds when you go for x-rays and the top of the bed was just above my butt.

So, I knew I’d struggle to get on the bed, off for the x-rays, back on, and then having to switch again when back in my room. I apologized for being difficult and asked if I could just go downstairs in a wheelchair instead.

Luckily the lady that took me down found a bed that wasn’t quite so high and I managed to get on without too much problem, all things considered.

I didn’t have to wait long to get the x-ray taken but I remember that it was really taxing on my body just to stand to have them taken. I was glad I at least had handles to hang onto.

I was amused looking at this x-ray after being blinded by the lower section because it almost looks like I have a nail in neck thanks to the neck IV.

Even more exhausted, I get back to the room and in bed and have more blood drawn. I never knew my blood type so it was neat to find out I’m O+.

At this point, I’m getting a lot of anti-nausea and some mild pain medications. The anti-nausea medications didn’t really work.

I was vomiting probably literally around 10+ times a day then. I remember we were constantly having to ask for more emesis bags and wipes.

Mr. Savvy hates vomit but he was such a sweetheart helping me clean my face up and get a new bag every time.

Finally Meeting The Surgeon

I was supposed to meet with the surgeon at his local practice the following day. Since I went back to the ER he came by to see me that same day.

I liked that he has a sense of humor as when he walked in he said, so, I guess this means you aren’t going to make your appointment tomorrow.

I laughed a bit and said no, I don’t think I am. He was very reassuring saying we’ll get you to feeling better soon.

I really appreciated that he took the time to answer any questions without making us feel rushed. We discussed what would and may happen during the surgery.

That there would be a large incision since the ovarian mass was so large. He wanted to take it out whole in case it was cancerous as you don’t want to risk cancerous cells spilling all over your insides.

He made sure of my wishes as far as what to take out and that I was okay with not being able to have children.

I had thought about it a lot over the past week and decided I would like to keep the other ovary if possible. I’ll be honest that I am still afraid of this happening to the other ovary at some point.

But, for now, I really wanted to keep the other ovary and not already go into menopause at just 32. Along with a lot of other reasons, including that research shows that those who have both ovaries removed at a younger age tend to die earlier than those that keep at least one ovary.

Mr. Savvy, of course, had to lighten the mood by asking if I would turn into the bearded woman if I had to have everything removed. Sigh.

I remember being completely real and honest and saying I was worried about the surgery because it seemed rather high risk, especially considering how big it was and that I was overweight, etc.

Yes, it is high risk and yes things could go wrong. It could even take you 6 months to a year to fully recover.

We’ll also have to check your bladder and intestines to make sure they haven’t been damaged. The surgery could be anywhere from an hour to several hours.

I also asked how much he thought the large ovarian cyst weight was. He said not to worry too much and reassured me that he thought it would weight around 30 to 40 pounds and that the largest he had removed in his career was 45 pounds.

If you paid attention to the number in the title of this series, you’ll see the irony here and that I’m a record breaker, ha. At the time I was just amazed that the weight of this thing could put me back under 300 pounds again.

He said that they were squeezing me in to have surgery that Friday. I was suddenly very glad I decided to come to the ER that day because I’m not sure when I would have been scheduled for surgery otherwise.

Oh, and me being the total nerd I am, asked them to take pictures during the surgery.

Either way, after talking with him I did feel a bit more at ease about things. At the very least, I felt like I was in good hands having found out more about his reputation.

I was still scared (hopefully not quite) to death about the surgery, though.

Seriously Scared To Have A High-Risk Surgery

So why exactly was I so scared to have this ovarian cyst removal surgery? Well, there were a few reasons.

First, I’ve never had surgery before. Unless you want to count wisdom teeth removal, which really wasn’t bad at all for me.

This was only the second time in my life I’ve ever been admitted to the hospital. The first was way back when I was just 8 and had really bad pneumonia.

The second reason is that I had never been put under or really had anesthesia at all before. I was actually supposed to when I had my wisdom teeth removal but, guess what, they couldn’t get a vein.

So I just had the injectable nerve blocker/numbers instead. I kind of always wondered if that happened for a reason because maybe I would have reacted poorly to the anesthesia.

Kind of an eerie thought to have in the back of your head. I also worried, considering my luck so far, that I’d be one of those oh so lucky people that wake up in the middle of the surgery, or only appear to be out but are actually feeling and hearing everything.

Silly, I know. I had the conversation with Mr. Savvy about what anesthesia is like. He assured me that I’d basically go to sleep, not even realize I was asleep, and then wake up without feeling like any time had passed.

I, of course, also had the usual fear of being left disabled somehow or even dying.

Dying was actually a rather large fear of mine because I, being realistic, wasn’t sure how my body would react to such a major surgery. It’s a good thing I’m extra stubborn sometimes.

At the same time, I at least found some comfort that if I did die it would at least all be over and I’d hopefully be at peace. I know that may sound morbid to some but I really don’t mean it that way.

The Fun Of Getting A Midline

This is how awesome my right arm looked after 24 hours in the hospital. My left didn’t look much better.

As I mentioned earlier, no one was able to get an IV in my arm my first day at the hospital. While I did get one in my neck, it’s not exactly efficient nor comfortable.

The neck IV also fell out the next day.  So I went several hours without both anti-nausea and pain medication.

Some more people tried on their own with my arm. No luck.

A couple people even tried with a special light. Nothing.

I was reassured that at surgery they are experts and not to worry because they would get me taken care of then if need be.

In the meantime, they were going to get an ultrasound team to find a vein and put in a midline in my arm. I’m fancy like that.

I was told that by doing an ultrasound they should be able to find a better, more stable and deeper vein. And that the midline itself would be more stable than a traditional IV and last longer.

And, most importantly, also be useable during surgery.

I thought the whole procedure was rather interesting. They kind of treat it like a surgery even though it’s done in your room.

They want things to be sterile as possible so they make everyone leave the room that doesn’t need to be there and won’t even let other medical staff in the room while they’re putting the line in.

Then they get you all set up. I remember they put a drape over the upper right body by my right arm since that was the one getting the midline.

The ultrasound tech said that it would probably hurt a good bit and may take a while as she inserted the line. I honestly didn’t really feel much more than a slight irritation.

The funny part is when she said oh wow, you have a really nice looking vein here. I wish all of our patients we have to do this with had a vein as nice as this. Ironic much? Ha!

She also said your arms look really weird. Have you lost a lot of weight? If I had only known just how much at the time.

With the midline, I also got some new bling for my wrist. I think they were supposed to remove one of the stickers each time blood was taken from it.

It was a relief to at least have that done because in my worry-wart mind I had been worried about a stable IV during surgery. Plus it was nice to have hydration and pain medication via IV again.

What Do You Eat On A Liquid Diet Before Surgery?

As I mentioned earlier, they put me on a liquid diet the 2 days before surgery. Though I’d honestly been on a self-imposed one for several days now.

It really wasn’t so bad but I just had no appetite nor interest at all. Here’s what my lunch was on the day I was admitted. I didn’t get to pick any of the items.

  • Unsweetened tea that came with sugar if I wanted
  • Vanilla pudding cup
  • Cream of chicken soup that was blended to be smooth
  • 2% milk
  • Apple juice

I think all I had was some of the apple juice. I remember I tried the cream of chicken and, well, it was honestly pretty gross.

Thankful For Good Friends And Awesome Nurses

I didn’t tell many people early on what was going on with me. I’m not really sure why.

I guess because, even though I’m telling my whole story here, I do tend to be a rather private person. And I don’t like to worry people or having them feel sorry for me.

But as it sunk in more and more what I actually had, and could have, and that there was a real possibility I may not make it through this, I opened up more.

I felt like it certainly couldn’t hurt to have as many prayers and positive thoughts as possible for me floating out there. I even posted on my Facebook wall about what was going on, something I never do.

And I was glad I did. I had more than one person take the time to talk about their experience with ovarian cysts or similar surgeries.

It was really reassuring hearing from them that things should be okay and that, yes, recovery may not be easy and it may take a long time but that that’s okay.

It was also really sweet that the couple we adopted a couple of our cats from sent me this cat-shaped bouquet of flowers. Not only was it adorable but it reminded me just how much gestures of caring really help when you’re at tough points in your life.

A majority of the nurses were also extra awesome, especially those working the night shift. I sadly can’t remember the names of all of them to thank today, but one I definitely remember is Layla. Though I can’t be certain that’s how she spelled it.

Anyway, she was amazing. I think she could tell I was rather apprehensive about everything and she was just super comforting and supportive, especially because I sent Mr. Savvy home to take care of the cats and get some rest the night before my surgery.

It may have more so been because I knew I needed to get as much rest as possible and, well, he snores. A lot.

She made me not be so serious for a few moments by laughing at her awesome monkey dance.

She also reassured me that she had been doing this for several years now and that with my type of mass I wasn’t going to have cancer. To not even worry about it.

I remember that as she helped me as I slowly and painfully got out of bed and went to the bathroom she commented that I had beautiful long hair and made me promise that one day after surgery I would come back and walk down the hall with my hair down and my head held high.

She may not even remember saying that now but it really meant a lot to me. So thank you, Layla, and to all the other nurses of amazingly awesome before my surgery.

Surgery Day Is Here!

It’s Friday. The day to get surgery and get rid of this thing is finally here! Hooray!

I was scared yet couldn’t wait for surgery at the same time. One of the residents had told me my surgery would probably be around 4 PM or so. It could be earlier if the surgeries before it went quicker, or later if they had complications.

Working from home I would often sleep in until at least 8:30 or 9 but ever since being in the hospital I’ve been up by 6 or 7. Not surprising since you constantly have people coming in wanting to take blood or get vitals.

So, I kept looking at the clock in anticipation. Sometimes only 15 minutes had passed. On a rare occasion, I was lucky and a whole 45 minutes would have gone by.

I think it was around 1 PM when I heard the nurse talking outside the door and said I was about to be taken down to surgery. Mr. Savvy wasn’t expecting me to go in so early and had to go into work for a couple hours so I gave him a call to let him know while they were getting me prepared to go downstairs to the OR.

Luckily he works for the hospital’s IT systems team and has a badge to go just about anywhere. I was glad he was there by the time I got downstairs in the prep area before you actually go into the operating room.

I had to make sure I didn’t have any jewelry or personal clothing on other than the hospital gown. They ask me questions like are you okay with getting a blood transfusion if needed and have me sign the consent forms.

The nurses that will be in the OR introduce themselves and make sure I haven’t eaten or drank anything that day.

I meet the anesthesiologist and we go over concerns. I appreciate that he was honest about the concern with my weight and that I am having so much reflux.

You obviously don’t want to be vomiting during surgery and risk choking and aspiration. So he said he would put a tube in my stomach during the surgery.

I probably wasn’t down there even an hour when I get to say goodbye for now to Mr. Savvy and go into the operating room. It was kind of surreal at that point that it was finally happening.

That I might wake up and actually not feel so miserable. That I might be able to actually walk normally again. That I wouldn’t be in constant pain. That I might be able to eat real food again and actually enjoy it without even vomiting.

The last things I really remember were the various nurses and the anesthesiologist coming into the room. Then he said I’m going to put the tube in your stomach but first give you some lidocaine so it shouldn’t hurt.

And that’s all I remember. I don’t remember being given any anesthesia.

I don’t remember being asked to count down or anything as you see on TV. I just felt like I was asleep until the next morning.

Now that this one post has turned into a novel I’ll stop here and continue next time with what things were like right after surgery. Well, the part I actually remember anyway.

 

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Jill

Monday 12th of November 2018

OMG you have been to hell and back hope you have a full recovery.Can I ask why it got so big and not attended to earlier?

Smart Savvy Living

Saturday 17th of November 2018

Thanks, Jill! It will take a while but I think I'll end up being better than ever. :) Of course, you're welcome to ask any questions. This is something I've wanted to be very open about from the beginning so hopefully fewer women have to go through anything remotely close to this.

There were a few reasons. One, I didn't have health insurance at the time so I didn't get regular checkups and only went to the doctor when very sick. Second, most of my symptoms I'd had mild issues with occasionally for pretty much my whole teen/adult life such as heartburn and back pain. I always thought they were independent of each other but everything progressively got worse this year rather quickly. Last, I honestly didn't notice it getting bigger at all until probably June. I've always been overweight so at first, I thought that's what it was. My "bloat" would actually subside and then come back until sometime in July, when it was also just different as far as hardness and feeling. So, at first, I really did think it was just bloat, especially with my other digestive issues. In hindsight, I was probably losing weight and the cyst was growing rapidly and starting to harden/calcify.

At first, I thought the symptoms would eventually resolve with better diet/fitness. And, sadly, in talking to other women and reading about other's experiences, when they go to their doctor with these symptoms they are often told they are just overweight/out of shape and that's the cause.

Thanks for reading!