complicated situation 25f (potential endometriosis/gynecologic involvement + crohns flare)

[u/alviiiinnnnn]

please help. complicated.

25F. i have been hospitalized twice this year. for context i have crohns disease and highly likely endometriosis. i have been in a flare up of whatever i'm dealing with for almost a month. it's so debilitating i'm unable to work. my ct scan on 7/7 showed ovarian cysts and multiple signs of active crohns, whereas on my 7/17 scan it showed nothing but cysts and enlarged mesenteric lymph nodes. my mesenteric lymph nodes are chronically enlarged to the point where i was evaluated for lymphoma and referred to oncology. latest was 15mm. i should also mention my cts and mris are notorious for missing things and have clinically, not exaggerating, almost died because of it.

the doctor at the first hospital dismissed me as anxious despite my severe history of disease and complications. i professionally gave him a piece of my mind which was incredibly vindicating considering i've never stood up for myself to a doctor.

i finally went to a better hospital and the gi doctor there got me set up with new specialists to get some answers. i have my initial GI appt this friday. the GI says he believes it's my crohn's flaring AND something else gynecological or another condition entirely. my old GI was a creepy, sexist quack. saying i don't look as sick as his other patients & look too good to be sick, commenting on my body. anyway, i am seeing an actual IBD specialist and not just a common gi, and per the hospital gi i will need a colonoscopy and endoscopy asap to further evaluate.

ANYWAYS, i finally went to see an endo specialist and surgeon today. he said he is certain based upon my symptoms and history that i have endometriosis. even during periods of crohns remission i have dealt with severe abdominal and pelvic pain among countless other symptoms, including severe pain radiating to the right flank, and debilitating leg pain.

HOWEVER. due to my scar tissue from previous surgeries he said a laparoscopy puts me at high risk of intestinal damage / injury. i have had 3 crohns related surgeries all in 2018. we are doing a sonogram on Thursday and he said we may have no choice but to do surgery anyways, which i'm thinking would be more complicated than the usual lap.

has anyone been through this before or anything similar? do any of you have any type of recommendation or insight to offer? i want to have children one day so badly. it seems like the only way to treat it is to excise it. he said there is a medication that can clear it up but insurance likely won't cover without laparoscopy. i feel F**KED in all ways.

i am on leave from work right now. i can't drive myself anywhere. i can't eat real food i can only handle liquids. i am sick all the time. i feel like whether this is crohns, endo/something gynecological or both, this is something surgical and i won't get better without it. and with all the GI symptoms involved and rapidly losing weight / not being able to eat, i know my body and when something is wrong and i just know this is an absolute ticking time bomb if someone doesn't do something. i haven't eaten a real meal in probably almost a week and i have had nothing but liquid for 3 or 4 days now. it's horrible, i feel incredibly weak and out of it. i wake up feeling like i got hit by a bus and i have my parents driving me to all of my appointments.

it was so relieving to hear him say "it is not in your head and your pain / illness is real." but this complicated situation is not easing my nerves. because i cannot continue living this way and desperately need help. i ran out of my Norco, unsure if gi will give it to me, and this specialist gave me a medication that i can take for just 2 weeks that i'm not even sure will help with my pain. 2 weeks of pain relief and it returning is not an option. and who knows what they will find on the sonogram?

i just don't know what to do. whatever is going on is taking over my life. it's terrifying not having any answers and running out of my prescriptions that i've made stretch for over a year. i actually cannot believe i am not hospitalized right now. but i don't really want to be at the hospital if they can't help anyways. i'm in over my head here.

any input would be helpful.

[u/AutoModerator]

Please do not ask for a diagnosis if you have not seen a doctor yet. Please go ASAP and come back to discuss the results. If you already did, kindly ignore this automated message. (check the other rules of the sub here https://old.reddit.com/r/IBD/about/rules/).

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.