Spoonie Life: My Last Week (fun with complications)
So, I’m having a really rough week. It feels like literally the second I get a break from one thing or a handle on another, then another thing pops up. I never get a break and it is exhausting. And sometimes it just makes you feel so alone because even those that support you - and I have a hugely supportive community of people in my life - just can’t understand. I’ve been feeling increasingly depressed and anxious and alone and my therapist does not have any availability to see me…possibly for months. So I wanted to just write up everything I’m going through because sometimes that helps but also because hopefully some of you may have gone through some similar things (esp. blood clots and ovarian cysts) and could give advice and/or just support.
Here’s a (not so) short summary of shit that’s been going on lately (in list form because why not). Don’t feel like you have to read it all. I know everyone has their own things going on. But I just needed somewhere to vent and while I shared some of this on FB, I also feel freer to be honest and just fully disclose how hard this is for me here. Sometimes that’s one good thing about this hell site - less reason to self-censor and try to sound positive/hopeful/happy when I really truly am not.
Last Monday (the 15th), I finally finished three months of IV antibiotics I was on for an intra-abdominal abscess (an infected collection of fluid that was right underneath my diaphragm which meant that, for a while, it hurt to even take a breath).
Good news right? Stopped it about a week ago which is awesome because the antibiotics were infused two hours x three times a day (i.e. six f*cking hours a day that I was connected to an IV bag).
But, I knew I would need a follow-up CT scan that was scheduled for this past Wednesday….and who knew what that would show.
Towards the end of last week, I started feeling very tired all the time. And then my physical stamina just suddenly….decompensated abruptly. I would get tired doing anything. Monotasker and I went to the grocery store and halfway through, I had to sit down (or risk passing out). After a few minutes, I told him “we need to get out of here” so we rushed through the rest of the basics we needed. And then while he checked out, I sat on a bench near-by. My heart was racing, I was out of breath, I was dizzy and light-headed, and just generally felt like I had run a 5K.
The first couple times this happened I thought “well, maybe I’m out of shape, I *haven’t* been working out at ALL lately. But then I remembered, it was what - a week ago that I attended NYCC where sure, I got tired sometimes and had to sit down once in a while, but it was nothing like this. And I knew that fitness doesn’t decompensate like that….it’s sad that when confronted with such a serious health issue that my first reaction was to just….blame myself. Right away.
So last Sunday (a little over a week ago), I went into the ER to get checked out. I hoped it was something SIMPLE, like dehydration or maybe my anemia had gotten worse or low levels of some kind of electrolyte imbalance. Anything that could be handled in a single evening. Three guesses about whether that was really the problem (though if you’ve followed me for more than a hot minute, I’m sure you know that the right answer is…because of course, NOTHING is ever simple).
At the ER, they decided to do the CT scan I was supposed to have that Wednesday just to make sure there wasn’t anything they were missing. And while the abscess they had been treating was largely unchanged (so they are going to stop the antibiotics), they also found that I had a blood clot in my pelvis. This is my third blood clot but the other two (a DVT in 2008 and a PE in 2015) were both post-surgical. This is my first blood clot that happened “spontaneously”. The admitted me to the hospital for about 48 hours and put me on a heparin drip until they could get a blood thinner arranged to release me and send me home.
A few observations and factoids about blood clots and their treatment for those who are interested.
People with Crohn’s Disease and Ulcerative Colitis (i.e. IBD) are more prone to blood clots. If you have IBD (or any autoimmune disease actually), you should be aware of this risk and know the signs of blood clots (esp. after surgery) and make sure to take preventative measures like standing up to walk around on long flights.
Traditionally, blood clots were treated with the blood thinner warfarin (Coumadin is its brand name). It takes a few days to get to the correct level in your blood, so you have to be on injections of another blood thinner Lovenox (twice a day, at home, injected yourself) until your “INR” reaches the right level in your blood. While on warfarin you have to have regular bloodwork to check your INR - every few days at first, then weekly, and if you’re on it long term the tests become less common.
This is very challenging for me - after ALL the health issues I’ve had, my veins are completely shot. Even basic blood work is a challenge.
There is a newer genre of blood thinners out there called DACOs - you’ve probably heard of them (they include Xarelto and Elliquis) which are better for a couple reasons, I guess, but the main one for me is the lack of required blood thinners. Three guesses on whether my health insurance approved them? NOPE. They sent me into pre-authorization hell (which frequently means “nope never going to happen” but in this case I hope means “well if your doctor pushes hard enough, we’ll give in eventually).
Question: has anyone gotten one of the DACOs approved? Is there anything specific that you had to prove? How did it end up working out?
If you are someone who menstruates, just be aware - going on a blood thinner can cause your period to start early (mine started less than two days after starting them - at least a week or two early) AND it will make your period longer and heavier.
P.S. - the GYN I saw yesterday said that Xarelto would make that even worse which leads into a later part of this post, but basically she said it was really important that I get my IUD replaced if I was going to be on Xarelto long term.
Since this is my third blood clot, it may mean that I will have to be on blood thinners permanently, which I’m not looking forward to AT ALL. Because really, do I need another medical complication? The answer is no. No, I do not. WHICH MAKES THE NEXT PART OF THIS POST IRONIC.
So this is the part of the post that I could actually use some advice on.
So for a while, maybe as long as a year, every CT or MRI I’ve had has included a note from the radiologist saying that a benign ovarian cyst was seen on the scan (or sometimes it was called an “inclusive cyst” from the ovary into the peritoneal area. It would sometimes “recommend follow up with a GYN”. Okay….fair enough.
When I asked my GI and my PCP about it a long while ago (maybe even two years ago), they both sort of just said “sure you should see an OB-GYN about that at some point” but really didn’t follow-up on it. And then time passed because I had a LOT of other health issues that took precedence.
Sometime nine-months to a year ago, I started having pain in the area where my rectum used to be, especially when I was sitting at my desk at work. There were days it was so bad that I could not sit directly on my butt at all and had to constantly find different positions. And on those days, I would frequently also have pretty severe pain in my pelvis. For months I basically ignored it…again, I have chronic pain and I had bigger fish to fry. Again, it got put on the back burner. Until one day it was so painful I was crying at work. So I called my PCP who also called my GI and he looked at my scan and said “it’s probably that cyst, you should see a GYN….” Still no urgency (and my PCP even said “I don’t know i it’s that - sometimes doctors like to blame cysts when they just don’t know what else is wrong.”) Again and again, this cyst was acknowledged but treated as no big deal - a nuisance to be dealt with eventually.
Side note: at no point in this did my PCP or my GI bother to ask me about pain with sex, despite that being a somewhat obvious question.
So nine months ago (or so), my PCP finally did get me a referral to see someone in the minimally invasive surgical OB-GYN office. I called to make that appointment and was told “you cannot see a surgeon until you’ve seen one of the GYNs” so I got an appointment for several months later with a GYN in the office.
Then, I had to cancel two different appointments with her because I kept being sick and/or in the hospital…and of course, each new appointment was two-three months later.
So my appointment with the GYN (who was lovely) was yesterday. She told me that my cyst (which is in both the ovary and the peritoneum) is now the size of a GRAPEFRUIT! It is almost certainly to blame for the pain I get sometimes in my (former) rectal area and the pain I have when I have sex. She said that even if it’s “benign”, if it’s symptomatic like this, I shouldn’t have to live that way. For the first time, I had a doctor who I felt like was taking this issue seriously even though it wasn’t related to my IBD and was “just” a lady issue. (Though to be fair to my PCP, she has taken it seriously in the past, but it’s just not her specialty).
This GYN also said she’d be willing to take me to the procedure room and sedate me to put an IUD in, whether I have surgery or not because I had such a bad experience getting it last time!!! I really loved that she took my concerns about that seriously. Bless her.
So the (very extended) upshot is that I made an appointment with the minimally invasive surgeon who I was supposed to see SIX-NINE months ago (who, amazingly enough, had an appointment available MONDAY) and I may need to have another surgery to take care of this cyst. This cyst that wasn’t always the size of a grapefruit….but years of being told that it was benign, to “check it out” eventually, and having all of my other health needs take precedence has now left me here. With a huge cyst that has ruined my sex life and is starting to seriously impact my everyday life too.
TL;DR? I have TERRIBLE LUCK. ESPECIALLY this week. And I’m just feeling absolutely overwhelmed, lonely, and frustrated. And if you’ve had experience having surgery for an ovarian cyst, especially one that’s “including” on something outside the ovary, I’d really appreciate your thoughts on the procedure and whether it helped and was worth it.
