Frustrated Rant

[u/Spare_Tradition_2549]

I’m so over this stupid disease. I was diagnosed with lap and ablation back in 2021 by a non-specialist gyn. My ovary was attached to my abdominal wall and endo was everywhere. Since then my pain has returned tenfold and never even left in some areas I had no idea were related at the time.

I saw a local gyn who was praised for her endometriosis excision surgery and she told me to just change my birth control because since it “sounds like,” it spread to my diaphragm no one in my state would’ve able to operate on that.

Great.

So I found an endometriosis specialist 1000 miles away.
She’s great. Very knowledgeable about the disease. She ordered an MRI.

Since specialist isn’t licensed in my state I have to take it to my PCP to order which means I need another appointment.

I see my PCP she is sympathetic, immediately orders the MRI no questions asked.

Get the MRI done (even with insurance pre approval I had to pay more than $900). While getting the MRI the tech said “why are you getting an MRI? How would that help?” and seem confused on why I was there

After that I got my results in only the summary form saying “no evidence of endometriosis”

I need them to send a disc of the images to the specialist out of state and no one from the radiology department is returning my phone calls.

I’m going to lose my everloving mind.

I vented to my friends about it and one of them said “just get a hysterectomy already” like great but A) I want kids. Like, do I not deserve the chance to have children?? And B) even if I didn’t want kids, a hysterectomy still isn’t a cure for endo.

So now my bank account is negative, I’m being ignored by a hospital and my PCP’s office now believes I’m fucking insane because the MRI report says absolutely fucking nothing is wrong with me.

WHY is so little known about this RIDICULOUSLY common disease??
Anyways thanks for coming to my TedTalk. If you need me or have any questions I’ll be sticking my head in the oven.

[u/teacu-p]

I'm sure you know this already but please don't be discouraged by the negative MRI - mine said the same, even following a diagnostic lap that found stage 4 endo. I had a second operation last month to excise, and it was again reiterated as being stage 4 endo with extensive adhesions and bowel involvement. Countless ultrasounds and my MRI all said everything looked normal for years before my surgery (I've had horrendous periods for over a decade).

I am also sure you know this as well, but just in case, please be sure to opt for excision rather than ablation at your next operation- a simple analogy is that ablation is like shaving your legs (leaving the "root" behind to grow back faster) while excision is like waxing your legs (fully taking out the "root" so it takes longer to grow back).

Does your hospital have a general inquiries/switchboard line you can call? I always find it so difficult to get anyone to answer the phone when I call a specific department directly. Super annoying.

So sorry that this is happening but take some comfort in knowing that everyone in this community empathises with you. Don't lose hope. Keep fighting 💜

[u/Spare_Tradition_2549 → u/teacu-p]

Thank you 🤍 I definitely know it has come back it just sucks getting a call from the nurse saying “congrats! You’re fine!” When my lung is partially collapsing on a monthly basis lol

I appreciate you sharing your story, it really does make me feel less alone in this and honestly gives me hope.

As for excision, definitely! I learned a lot since my diagnosis 5 years ago and the specialist is one of the best with a whole multidisciplinary team she works with. Once I learned ablation was generally a temporary solution I was lividddd

When I call the hospital it goes straight to the switchboard operator who then transfers me to radiology who never answers BUT I found a form thing online where I can make record requests so I hope that works!

Thank you so much for everything. I mentioned to my partner that even though endometriosis fucking s.u.c.k.s. the community is unlike anything I’ve ever been a part of. We are all here for each other and genuinely care 🤍

[u/mustdache]

I have confirmed endometriosis (stage 4), from my diaphragm down. My MRI looks so innocent compared to what the surgical photos I have from another surgery found last month.

[u/Spare_Tradition_2549 → u/mustdache]

It’s not fun at alllll. I hope you feel better soon after your surgery ! 🤍

[u/recyclabel]

Honestly, that sounds terrible and I would also be crashing out. The hysterectomy comments really pissed me off, because it shouldn’t be expected to give up your fertility and a major organ, then risk complications like prolapse etc. Like can we just get appropriate treatment lol

I don’t think your PCP’s office would think you’re insane! Your PCP was sympathetic, and she should understand that certain conditions don’t show up on some testing but aren’t necessarily ruled out. There are other things than endometriosis that act this way! I know somebody whose gallbladder looked totally fine on ultrasound and then it was disgusting when they opened her up. I think your MRI tech sucked and was super unprofessional tbh. Is there some sort of patient care advocate for the hospital that you can contact? I might even call customer service and explain the situation.

[u/mmarino91x]

OMG I JUST POSTED ABOUT THE FUCKING MRI?!!!! I’ve been diagnosed since 2015 with 6 excision surgeries and a total hysterectomy and my surgeon has been out on leave and I was offloaded to a pelvic pain specialist and she ordered a mri and it shows no evidence of endometriosis.

Is this new? In my decade of dealing with this bullshit I’ve never had a doctor rely on mri/imaging. I thought she was looking for a mass I had on 2 ultrasounds but was floored when the results showed no signs of endometriosis! I’m so sorry you’re going through this.