u/_trashflavoredtrash

hi! i have been battling with insurance to get a hysterectomy for most of the year now, and it has finally gotten approved (🎉). however, i am now having second thoughts on whether or not i should go through with the procedure with my gyno, or if i should go to a specialist instead.
here is some relevant context/information that is causing me to have second thoughts:

when i was initially asking my doctor about the hysterectomy, i asked her if they would be excising the endometriosis that they find in my body during the procedure. her response to this question was “yeah, we can do that if you want!” which was a yellow flag for me. i would think that should be a given if this was someone who really truly knew what they were doing? i didn’t put too much thought into it, however, and figured maybe she just worded it strangely. later, i was going through all my medical notes from my visits with her and i noticed that she said in them that they would be “cauterizing” any endo they find…this was another yellow? orange? red? flag for me considering ablation is no longer the golden standard for endo and i found it strange they referred to it as “cauterizing”.
while i was waiting for my regular doctor to fight the initial denial from insurance, i realized that there was a highly experienced specialist in my city. i do have an appointment to meet with them in november, however, they do not take insurance at all.

so this now leaves me with the dilemma of whether or not i proceed with getting the surgery done w my regular doctor with insurance, or if i go to the specialist who does not take insurance. my concern is if i go with my regular gyno and they do the surgery and do ablation, my endo will just come back and i will end up needing to get another surgery, anyway. if i go with the specialist, its going to cost an insane amount of money (that i definitely don’t have but would figure out somehow with a loan or something 😵‍💫) but i would know for sure that i am in good hands.

i do not even have an official diagnosis as i’ve never gotten a lap, but my doctor and i are confident i have endo due to symptoms, family history, and i have a cyst on my left ovary that they believe is an endometrioma. i have no idea how much endo i may or may not have and i do not know how bad or widespread it is. my symptoms have gotten progressively worse, however, which makes me feel like it may be spreading. if my ovarian cyst is indeed an endometrioma, that’s also a sign of pretty severe endo (as far as i know).

do i just go for it and get the surgery in october or do i wait until i see the specialist in november and then decide?

this is just a rant/vent about things all of us have experienced, i’m sure.
i’ve been struggling with insane cramps forever and ever (im talkin pass out/puke/legs won’t work/gotta go to the ER just to get some pain relief/etc). as i’ve gotten older (34 next month) it has gotten worse and more frequent. it’s still mostly just bad flares the first 2 days of my period, but i have to cancel all plans most months on those days and i can’t go to work because im essentially bedridden or stuck on the floor of my shower thrashing into oblivion. this gives me so much anxiety because im always scared im going to lose my job or something, even though my bosses have never been anything but nice and understanding about it. its just one of those awesome mental side effects that come along with having a chronic pain disease that seemingly no one in the medical world gives a fuck about.
this year, i am finally over dealing with this and decided im getting a hysterectomy. i started the process of trying to get the ball rolling with insurance garbage at the beginning of april (~2.5 months ago) and, as expected, its just been an expensive nightmare of hoops to jump through.
my dr told me id need an endometrial biopsy because my insurance was going to require that before they approved surgery, so we did that on the fly. lucky for me my cramps are so bad that this procedure was only a 4/10 on the pain scale for me which is great because i, of course, had no pain meds/anxiety meds/numbing agents/whatever. got that done, got my bloodwork done, got my pap done, got an external and transvaginal ultrasound. as expected, everything turned up fine with no abnormalities — aside from the fact that a (suspected by my dr) endometrioma on my left ovary has grown barely since my last ultrasounds (prob 2 years ago), and my right ovary now also has two new cysts on it. welcome to the party girliesss!
my dr submitted the request for surgery approval to my insurance and — shocker! — it was denied because the surgery is “not medically necessary”. so, i’ve been waiting about a month and half since this news for my dr to dispute this with insurance in whatever way she can. she seems pretty decent about advocating for me so far so i was a little hopeful but knew better than to get my hopes up much lol.
finally yesterday my dr office called me to schedule an in office hysteroscopy for july 7th. they only do these mon-fri at 8:30 am so that means i am going to have to miss work AGAIN for this procedure. upon doing my own research into this procedure, im not entirely sure why they think this is going to help my case at all. they told me that it will “help prove to the insurance company that my surgery is medically necessary”. i am pretty confident that they will, as usual, find nothing and it will prove nothing to anyone considering most of my problem is *outside* of my uterus???? but what do i know im not a doctor 🤪
when they called me yesterday to schedule and confirm my appointment for the procedure they let me know that even with my insurance it was going to cost $2700 and that i had to pay the full amount at the time of the procedure. so, i told them they could go ahead and cancel that appointment because i don’t have $3k to pay that. i also still owe them ~$600 for all the other tests they have done so far. i am well aware that getting a hysterectomy is going to cost a lot more, but i am willing to pay a big sum one time to know that i will at least not have to suffer the way i do every month. but i cannot afford to just keep spending thousands of dollars on pointless fucking procedures that are painful and make me miss more work just to keep getting denied the surgery.
anyway, this made me crash out so hard yesterday that it sent my thoughts to a very dark place. it’s just so hard to handle the gaslighting and shit even still after all this time. i knew that this was going to be the case all along, but it still makes me feel like i just got punched in the chest. i’ve been crying for two days and i just am at such a loss that im ready to give up. i am sorry to anyone else who has to deal with this. it’s truly the fucking worst and it is so unfair.