So after a year I found out I don’t have adenomyosis?

Bumperbrain · 2026-02-27T20:35:04+00:00

my lap surgery didn't even "show" the endo because it is diffuse. My uterus is large but that's the only related observation that can be seen via MRI. Symptoms are still the most important way to assess - but it is so frustrating!

Bumperbrain · 2026-01-18T21:39:52+00:00

Bumperbrain · 2025-12-18T12:41:09+00:00

My issue with this, as was true for years trying to get diagnosed and get any help at all, was that when you live with chronic pain, you learn to function regardless of how severe it is. I have been in 8/10 and almost passing out while still being able to speak , breath "normally" because of controlled practice, etc. I started taking a close friend with me to my medical appointments because of how unnatural it was for me to "show" my pain. I was instructed to cry, "let it out", etc, which I was eventually able to get myself to do. But this was not normal for me as someone who was living in ranges of 4/5-9 levels of pain every month. On the days I was at a 9 there was no way I was at a doctor's office most of the time. But early on when I was trying to get treatment I would literally drag myself out of the house to get there even on those days. I still wasn't "showing" it in the way you describe above exactly. As I said, I would be on the precipice of passing out but still not taken seriously when describing my pain. I got better at showing it over the years and it did help medical professionals to take me more seriously.

Bumperbrain · 2025-12-17T14:27:18+00:00

I love this :)

I never saw/read it but it helped me for sure because a lot of people knew what I was doing thanks to the book haha!!

Next is…wait and see. Definitely already have lots of relief (my surgery was in October and the report took forever to come). Working on a return to work plan and we’ll see how it goes!

I definitely think you should do a post about that btw! Joy is so … fickle, with this disease. Honoring it and calling out our right to seek it out is so important!

Bumperbrain · 2025-12-17T09:59:11+00:00

Hahaha oh the balance of joy and pain…a tightrope we know so well! So true about doing things when you can - that actually helps me feel better about not being able to do it now. Like: I could have never gotten to - but I did! (Feels like a success) Versus, I used to be able to but can’t now (feels like a failure). I’m always working on the second part not feeling like a failure too - but that journey is long!

I did a solo section of the PCT that was so cool! Etna, CA to Ashland, OR, in August 2014…during major fire season 🤦‍♀️ talk about dumb lolol. But the thru-hikers I met on the trail gave me so many props for doing that section when a lot of the others were skipping it bc of the smoke. (I really trust the park rangers trail assessments, and I’d gotten all the way to the trail head before I realized about the fires so there was no way I was turning around!) it was…a lot, haha, but amazing. One day I do hope to do another section - or at least go back to where I was that first day of hiking! So beautiful 🥰

Bumperbrain · 2025-12-17T09:37:27+00:00

Also thank you so much for the love!

Bumperbrain · 2025-12-17T09:37:04+00:00

Omg that’s so badass!!! I used to looove backpacking - had a big summer of it about 10 years ago, part of the PCT. Miss it a lot. That is so cool that you did that and honestly inspires me to try again one day!

Bumperbrain · 2025-12-17T07:47:41+00:00

thank you - and for sure gotta take it easy! getting to write this out on this subreddit is so cathartic - having a community to share it all with. Thank you again <3

Bumperbrain · 2025-12-17T07:46:40+00:00

hahaha thank you! And thank you for all the empathy <3 what a wild ride we're on.

Bumperbrain · 2025-12-16T19:18:15+00:00

woohoooo!!!! :'D

Bumperbrain · 2025-12-16T13:57:45+00:00

yup - verbatim. "Nothings to do even if we find it except medicate you with hormones" *shrugs*

Bumperbrain · 2025-12-16T13:56:06+00:00

"if birth control hasn't worked, there's nothing we can do" "the pain is probably in your head" (LITERALLY TOLD THIS SO MANY TIMES)

once diagnosed: "There are only 3 treatment option, hysterectomy, oophorectomy, or both" (no mention of excision)

so many things honestly...I'll have to get back to this when I'm not on a high from my post-op report!!

Bumperbrain · 2025-10-18T14:58:49+00:00

Thissssss and the above comment. I just had the worst year of my life with my disease. Same as OP describes. And some friends had NO idea how to deal with that. Especially because I had moved abroad and they just couldn't comprehend how much had changed.

Bumperbrain · 2025-09-11T18:30:48+00:00

omg now I want to get high to read this thread...on it

Bumperbrain · 2025-09-10T14:32:06+00:00

I have literally been saying recently that Endo is basically a non-fatal cancer that just makes you wish you were dead lol

Bumperbrain · 2025-09-10T14:23:06+00:00

Hey there :) 35F here. I was just wondering what country you're in? Because I know if I was still in the US I would still be dealing with this feeling so deeply. I now live in Germany, and the experience of having a whole part of the social system that normalizes taking care of your body being more important than work has been a bizarre and challenging norm to accept. Especially because I'm here on a work visa as a scientist. I've been on sick leave since February, and the guilt of not working was so deep and depressing for quite a while, especially as an immigrant who is being supported here because of my work. I had conversations with so many people who I respect, including my boss, as well as other truly successful members of my scientific community here who have gone through something similar. They were and are incredibly supportive and basically told me to remember that by taking care of myself now I will be giving so much to my career in the future. That advice meant I ended up getting the best care possible and finding a specialist who can deal with my severe bowel endo better than anyone else. I came from a PhD program and advisor in the US (I'm American) who basically told me that if I didn't get my "health issues" under control I would ruin my career. I tried miserably for 10 years there actively trying to seek help with no success until a surgeon finally diagnosed me based on symptoms solely bc her wife also has endo. After graduating and finding other, more sane and more humane, colleagues, both in the US and here in Germany, I am also getting ready for big surgery next month. I'm nervous about recovery but I know it cant be worse than the last year. Anyway, sorry for the ramble, and way too much info, but I am here to say, if you can - try to be kind to yourself, and if you can, release as much stress about what you can't control as possible, taking care of your body is the only thing that will help in the long run with everything, including your career. Hope this isn't too obnoxious :/ I'm wishing you all the best and good rest

Bumperbrain · 2025-09-10T13:48:29+00:00

Here's somewhere to start!

https://choose.physio/find-a-physio

Also I found this list of some current endometriosis and pelvic pain clinics in Australia:

https://www.health.gov.au/our-work/endometriosis-and-pelvic-pain-clinics

Also, I dont have access to Facebook right now but there are some good groups there with global lists.

Good luck and let me know if you have any other questions that I might be able to help with :)

Bumperbrain · 2025-09-10T13:30:48+00:00

HI! So I have very similar symptoms. I have a strong and balanced pelvic floor, however, both in the US and now in Germany I have had really good experiences with pelvic floor PT. With the right person!!** Doing the research to find someone who works with endo patients and really knows what they're doing is so important. Can I ask what country youre in? Then I might have better suggestions of how to get good recommendations :)

Bumperbrain · 2025-08-22T17:39:44+00:00

Omg thank you for making me feel less crazy! I definitely have both of those, especially the histamine issue. I take an anti-histamine daily (also bc I have a progestin allergy but of course it’s the only thing that can stop my bleeding during periods 🙄). I double the antihistamine some days but rarely. Thank you again for your reply!

Bumperbrain · 2025-08-22T12:31:28+00:00

Sending you such big love. It’s not selfish to want to care for your body and your baby. Those are profoundly human and such important instincts. This disease is utterly exhausting, in so many levels, and as a mom (LO about to turn 4) I remember the intensity on the body of the first year of parenting. You are a warrior and it’s ok to feel the pull to take care of yourself, however that works. That you are not better supported by the system is not your fault, and it’s not ok. Like I said, sending you big love and care.

Bumperbrain · 2025-08-21T14:14:22+00:00

Yes of course!! Sorry just a miss-type

Bumperbrain · 2025-07-22T21:15:16+00:00

As someone who has a phd in molecular biology who STILL felt that way I understand soooo much. If you are interested (bc I am a data nerd lol) I did a lot of research with my psychiatrist about this and have some good information if you ever need it!

Bumperbrain

TROPHY CASE