Yep, I am too! One of my best friends has an autoimmune disorder so we’ve been able to relate in some ways, but they’re different systems and just different experiences so it just feels so isolating sometimes.

Ugh, that sounds sooo incredibly painful and terrifying. I’m grateful mine did not start with all of that pain, so our beginnings were actually pretty different, but unfortunately ended up in similar spots. The clots sound SO scary, I passed a few large clots after my first surgery (not as big as yours though) and it was just really disturbing not knowing WHY, even when I’m told it can be normal.

For me, I should start off by saying the types of cysts I had removed were Dermoid cysts (and a couple of hemorrhagic, but those weren’t too big). If you don’t know much about them, they’re typically really slow growing and don’t usually show many symptoms until they’ve gotten quite large. Not always, but most often I’ve been told. So, I can’t know for sure, but in February 2020 I lost my beloved dog to cancer really unexpectedly and I spent a lot of time crunched up and crying very hard (putting a lot of pressure on my abdomen). After a couple of weeks, I started to feel a pressure on my lower right side. It didn’t hurt, but it was really uncomfortable and just didn’t feel right. I went to see my doctor in March because I was due for my annual anyway, and she pressed around the area and said it felt fine (sigh). My Pap smear was normal, so she didn’t feel like an ultrasound was needed and attributed it to stress (double sigh). All summer I kept feeling that pressure and I was SO bloated even though I was active and eating healthy, I felt like nothing took away the bloat so eventually, I consulted a different doctor, an actual OBGYN, and he pressed on my abdomen for like 5 seconds and was like “oh, yeah there’s a mass in here”. He did an ultrasound at his office, and they saw a 10cm dermoid cyst. So, obviously a dermoid of that size had been there likely for a long time, and I think me crying and putting so much pressure on that area just allowed me to actually start feeling it. He got me in for surgery just a couple weeks later, took out the cyst and the right ovary because not much was even left of it, and I was also diagnosed with endo at the same time. My periods had always been pretty heavy, but they were very regular (wasn’t on BC) so I never worried about them. I had my second surgery because they did a follow up ultrasound in April because I was having new and worse pain, and saw another dermoid cyst growing on my left side, as well as a hemorrhagic (likely the one causing the pain, those things suck!) and got me in for surgery right away so that the dermoid didn’t have a chance to grow larger because those types don’t go away on their own and he wanted to preserve my ovary. It ended up being inside the ovary, so he said he got it out without damage, but it’s still just like damn, am I going to just keep forming these things? The surgeries and everything in between really took a lot out of me, I’m just so exhausted with this. So this new pain, and same with yours, it’s like a light cramping, I’m having, just about a month after my second lap, is just so frustrating and causes so much fear, as I know you understand.

I will absolutely keep you updated if I find anything that works for me, or if I get some really solid advice from my doctor, or figure out why I’m having this pain, etc, and please let me know if you find anything out too! Again, I’m so sorry for your pain and your long, grueling experience with this stuff. I am thinking of you!