u/kylaisjadedagain

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THIS IS LONG BUT PLEASE READ, i have no idea what to do. i need advice from anyone who can help. i have nobody who will help me and it's killing me, i'm in SO much pain. so, i've been diagnosed since about 13, so i know a lot about the way my endo feels, because it's been so long. (i want to start this off by saying i have been treated horribly and taken advantage of by doctors for so long, i have to bring a parent with me because of the way they treat me when i am alone, even though i'm literally 20.) so, i can usually tell when i have a cyst, so at the very end of may i had to go to the er (obviously i did end up having a cyst). that's all that they saw though (transabdominal ultrasound used). i had been given some meds for a little to kind of get through the pain, and eventually i was doing a lot better. then, about a week ago, the pain came back and worse than ever. i messaged my doctors about it and got that classic "well if it's that bad, go to the er." so i eventually caved after the pain got so worse i was sobbing and almost throwing up (which is a lot for me, i have a pretty high pain tolerance and can be in a lot of pain and still act normal, so this was extremely concerning.) so i did eventually go.. all that was done was basic urine, and a transabdominal. the doctor came out, and in an extremely rude tone, he "explained" that there was absolutely nothing wrong in my ultrasound. "no torsion or free fluid". he sent me home, got angry when i asked if there was any medication i could have, and didn't give me my ultrasound results on paper. (this hospital is supposed to give your scans on paper, regardless of what they see.) thank GOD i have the patient portal, because when i got the notification that i could see my scan, it literally said right there, "free fluid is noted in the cul de sac"... i was genuinely shocked at how he had the audacity to be that rude when he literally couldn't even tell me what the real results are. two days ago, pain got much worse, and i had to go back to a different er, which pissed me off because that last doctor disrupted so much for me, i shouldn't have had to go back to the er. this doctor wasn't fantastic and he wasn't "nice", but he actually gave me meds and looked at my scans and told me he has no idea how the last doctor didn't tell me i literally have a ruptured cyst. i am a little bothered that i have ONLY had a transabdominal ultrasound and basic urine. i wanted to ask if anyone thought that i need more than just those tests? they keep saying to see my gyn but i explain every time that i literally can't see one in over a month and i'm suffering in so much pain. :/ i'm still having awful pain, my oxycodone helps it a little bit (from about a 9 to a 5...) and it feels like the relief is so short lived. this is affecting my mental health, i already struggle with some really hard thoughts regarding how i feel about "being here"... i am in so much pain. i don't know what to do. i messaged my normal doctors and they won't answer me. i feel broken, exhausted, and more depressed than ever. should i be more concerned? does anyone have any advice on what i should address with a doctor?

tl;dr: have ruptured cyst, have barely gotten imaging and have gotten no blood tests. asking for advice or any sort of related experiences, or even just someone to talk to... i know it's a long post, but i'm begging literally ANYONE to read this and reply.

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i literally have a long list of things with proof. it's already known i have endo and pots and heds and gastroparesis and a few other things, but for the last few months i've been suffering. i can barely leave the house because of how bad i feel. i sleep almost all the time and am still tired. i had a lump on my neck that i got imaged that was small but hyperdense, but that imaging was over 2 months ago and i even have a new lump near that one that hasn't been imaged. my memory and mind are completely different. i've been losing weight. over 25 pounds in only a few months. i'm barely eating. i don't want to anymore. i literally hate eating now. it's a task. i sweat a lot at night now, which is young. i feel exhausted in every way possible. it's exhausting to shower, to go down the stairs, get dressed. i've had multiple doctors look me in the eye and literally tell me that they were "concerned". and never helped. literally everyone is acting like i'm crazy. but i almost always know what's going on in my body. i genuinely feel like if i don't figure this out it'll get bad. i'm getting worse and it's terrifying to lose yourself in your own body. is there anyone who has had a similar experience? maybe has hope?

also adding that there were a few tests that were negative but pretty random ones
any tick disease
rheumatoid arthritis
lupus

i adore women in general but to me there's nothing better to me than seeing a pretty femme in dresses and heels and makeup and long hair, it's always my favorite kind of girl. which is great but the problem for me is that it's really hard to tell if a girl that feminine likes girls. which is also an issue with me because i really don't think i look gay and i have no interest in changing my style because i LOVE being a girl and being girly. how can i go about starting a femme4femme convo other than hinge/tinder?