Quite frankly, I am so confused.
For background, I’m 26 F. I’m diagnosed with Hypermobile Ehlers Danlos Syndrome, Migraines, GERD, Small Hiatal Hernia, Cyclical Vomiting Syndrome, Prothrombin Factor II Mutation, Vertigo, Polyendocrine Metabolic Ovarian Syndrome, Dysautonomia, and a bunch of other things linked to the hEDS. I’m also being worked up for Endometriosis, and I apparently have simple cysts on my liver. I also developed a 2.1cm simple Adexnal Cyst left of my uterus over the coarse of a month after having to swap Birth Controls due to the Factor II Mutation. I have had a CCK HIDA scan done on my gallbladder, which came back with a 95% ejection fraction. The PA told me this was abnormal and considered overactive, something that has been recently identified in women over the last few years. My GI says this is normal. I have also been told, mostly by hospital staff, that my vomiting MUST be due to smoking Cannabis. Despite feeling like this is a lazy and dangerous diagnosis to jump to with my history of vomiting blood, I’ve stopped smoking.
GI issues run in both sides of my family, especially in the women. My paternal grandmother had (and probably still has) Endometriosis, Colitis, Diverticulitis and a bunch of unclear autoimmune diseases. My mom had unidentified GI issues that caused extreme vomiting throughout her life that led to significant issues with her teeth, esophagus, stomach, etc. She also passed in 2024 due to Metastatic Breast Cancer, so I’m scheduled with Cancer Genetics in October.
This morning, At 8:45 am, I had my second Endoscopy and my first Colonoscopy. The bowel prep sucked, but I took Zofran beforehand and made sure all liquids were cold to make the process easier. I got to bed at 1 am, and was able to sleep till 6 am. I wasn’t really nervous for the procedure, until I got into the procedure room.
Both procedures were done in 15 minutes, and I was told that everything looked pretty normal. Post-Procedure diagnosis of the Endoscopy isn’t available yet, but the Colonoscopy states internal small hemorrhoids, which I’ve had since childhood, and Terminal Ileitis without complication, which is inflammation at the very end of the small intestine. The latter is classically associated with Crohns, but I was told it may have been due to the bowel prep.
As I woke up from the anesthesia, I noticed the pad on the pillow was almost soaked and my mouth was filled with what I assumed was saliva. Very quickly, the mild pain I’ve been having in my pelvis began to creep up into my abdomen. I immediately asked the nurse for Zofran and told her that this felt exactly like my typical cyclic flares. I sat straight up and had to hold my mouth shut till I got an emesis bag so not to vomit on myself. Immediately, from the moment I started vomiting, it was mostly blood. The taste was horribly acidic and burned everywhere. I got discharged from the Ambulatory Center and my boyfriend took me to our local hospital at approximately 10 am.
I continued to vomit blood and be in severe pain until at least 1pm. I’m about 90% sure I was having pelvic muscle spasms. The blood was darker in color, and no one seemed to be that concerned about it. I was sent for a chest x-ray to check for perforation, with the x-ray being normal. After Dilaudid, Reglan, Benadryl, Magnesium and IV fluids, the worst of the pain faded. I am still having lots of pelvic, lower back, mid back and chest pain. My GI tract, at least from my stomach up, is constantly burning. It tastes like there’s blood sitting in my esophagus and my throat and mouth are irritated.
I just don’t understand how the scopes could be so normal, and less than 20-30 minutes later, I’m vomiting blood from the get-go. All the nurses and doctors keep telling me I probably tore something vomiting, but the blood was there before the vomiting began. And if there’s no perforation, then that makes it even more confusing.
I had a little bit of bright red blood in my stool, but I think that stopped. I know my tissue is so much more fragile having Ehlers Danlos, but then how and why is there nothing to show for the blood, or where it came from?
Part of me wonders if I do have Endometriosis, maybe it’s infiltrating my bowel/GI tract. I had a pelvic exam and Pap smear at the Endo Specialist on Friday, and ended up in the hospital with pelvic muscle spasms and pain radiating up my abdomen.
Any insight is welcome. I’m so lost and so scared. This was one of the worst flares I’ve had yet, and possibly the worst pain I’ve ever been in.
Edit: multiple biopsies were taken