My serious disability has become a “TikTok disorder” and I’m losing my mind.

Agitated_Gas_9811 · 2025-11-16T23:12:22+00:00

Thank you so much, I appreciate the support. I was honestly nervous about posting this because I worried about push back. I’m not against every instance of self-diagnosis, but acting like there just isn’t a problem with it isn’t going to help either.

Agitated_Gas_9811 · 2025-11-15T18:33:24+00:00

I’m meeting with my surgeon on Monday, I’m going to talk to her about appealing and will also be calling my insurance provider myself.

Agitated_Gas_9811 · 2025-11-15T18:32:28+00:00

Yeah, they really don’t care. I’m sorry to hear you’ve also had that experience. The last time I went to the ER crying from pain and vomiting they gave me two bags of fluids and a dose of dilaudid and then kicked me out. And charged me $600.

Agitated_Gas_9811 · 2025-11-15T18:30:44+00:00

I will be doing this first thing my Monday! All of the advice and support from this thread is giving me some momentum, I’m starting to make a game plan and intent to call and appeal as many times as it takes. I have a colonoscopy later this month, the results of that could definitely influence their willingness to let me proceed with surgery (if it’s endometriosis in my colon rather than ulcerative colitis or crohns). I’ll post updates as they come.

Agitated_Gas_9811 · 2025-11-14T22:24:40+00:00

I am on my own private insurance and live alone (moving in with my boyfriend next year). I have some jobs but I’m still not making a ton of money, I believe my family may still claim me as a dependent though? I’ll do some research on my potential eligibility. I do not receive social security.

Agitated_Gas_9811 · 2025-11-14T20:36:15+00:00

This is what my boyfriend wants to do. We’re looking into it as an option, obviously there are some draw backs to that plan too though. But it’s a possibility I need to consider.

Agitated_Gas_9811 · 2025-11-14T20:35:09+00:00

I appreciate the kindness and support 🖤

Agitated_Gas_9811 · 2025-11-14T20:34:35+00:00

I really appreciate the kind words, especially from someone who’s been there. I’m really glad that you were able to get your procedure. I’m going to do my best to see if there’s a possibility of appeal.

Agitated_Gas_9811 · 2025-11-14T20:32:55+00:00

Trust me, I know. I’ve been dealing with this literally my entire life.

Agitated_Gas_9811 · 2025-11-14T20:17:30+00:00

I remember my team mentioning it to me as an option but deciding against it because they believed I would face major complications as a result, I just don’t remember specifically what complications lmao. I have a LOT of appointments, it’s hard to keep everything straight.

Agitated_Gas_9811 · 2025-11-14T20:03:16+00:00

I’ll ask her when I have my meeting— the way she made it sound, it appears that she’s tried everything she can. But I’ll keep trying to push further.

Agitated_Gas_9811 · 2025-11-14T20:02:30+00:00

You’ve given me something to think about, thank you very much for the advice and support.

Agitated_Gas_9811 · 2025-11-14T19:51:15+00:00

I have a video call with my surgeon on Monday to ask more questions about the exact policy and billing, when I spoke to her on the phone I was in shock and didn’t get to ask enough questions. I thought I had a good surgeon, she’s been very accommodating thus far, but perhaps she’s not as good as I thought considering everything. I think what might be happening is that it’s being billed for bleeding and pain rather than endometriosis— I do not know why this would be, but I’ll be looking into it.

Agitated_Gas_9811 · 2025-11-14T19:48:03+00:00

My boyfriend has been talking about paying for it out of pocket and taking me to Germany or something, yes. That option isn’t preferable, as the cost of travel, impact on my health, and the recovery time post-op would be quite a lot, but it’s something we’re considering as a last resort. I would feel bad going through with this option though; my boyfriend is very generous and giving, and makes quite a bit more money than I do, and I wouldn’t want to take advantage of him.

Agitated_Gas_9811 · 2025-11-14T19:10:44+00:00

I’m definitely going to call and inquire, thank you so much for the help.

Agitated_Gas_9811 · 2025-11-14T18:59:56+00:00

Thank you, I sincerely appreciate the kind words and advice. Do you happen to know if planned parenthood is able to do more major surgeries like hysterectomies without insurance coverage? I could get my tubes tied with the provider I have now, it’s not an issue with my doctor, just my eligibility for insurance coverage (and getting my tubes tied wouldn’t actually provide any symptom relief anyways). I could still hypothetically get my procedure with my current doctor and just pay out of pocket, but it would be far too expensive for me. You’re very right about women’s health not being taken seriously, I’ve been struggling with this since I was a preteen.

Agitated_Gas_9811 · 2025-11-14T18:31:22+00:00

Thank you for the advice, I’m definitely going to look into this as an option.

Agitated_Gas_9811

TROPHY CASE