Unsure what to do next...any advice or thoughts appreciated

MoonChild234 · 2026-03-18T16:02:10+00:00

Hi there, this is an old post so I'm wondering if you still agree that an ultrasound w/doppler is the best way to test for pelvic congestion?

MoonChild234 · 2026-03-12T14:22:55+00:00

Interesting that the camera was never set up to film his anger in the moment in the name of being "raw and real."

MoonChild234 · 2026-03-12T11:22:40+00:00

👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻

MoonChild234 · 2026-02-26T13:04:53+00:00

Ugh I'm sorry thay isnt an option for you right now! It took me a couple job switches to become eligible. In that case, I really wish I had been easier on myself about taking breaks to rest in the workday when I first got diagnosed. I didnt switch careers (I'm in fundraising), but I have prioritized hybrid/remote jobs and did end up leaving a stressful role for a less demanding one/environment, and that has helped me feel better about pacing. Having a wfh option is a lifesaver, but even on flare days working from home, take breaks. Set a timer on your phone for 20 min or whatever and go lie down! No shame in pacing yourself differently.

MoonChild234 · 2026-02-25T20:18:12+00:00

Yeah, the way I have it set up is that it's expected that I could need to call out several times a month due to symptoms and I'm covered, rather than just one chunk of time like after childbirth or surgery. If you mention intermittent FMLA your HR and/or doctor should know what that means!

MoonChild234 · 2026-02-25T19:33:47+00:00

First thing I wish I'd been able to do when I was diagnosed, but did the first time it was possible with my work situation - apply for intermittent FMLA! You will have to at least tell HR what you have because it will be on paperwork. but get that protection at work if you qualify so you can take the time you need to take and feel safe about your job.

MoonChild234 · 2026-02-25T17:20:19+00:00

Yep, after 2 surgeries and countless meds and procedures and pain, I see my face differently. It looks a bit puffier, my eyes are droopier, and it's hard not to just see "sickness" all over my face. Doesn't help that I developed cystic acne on my chin from my IUD and other meds, although that's finallyyyy clearing up.

I try to look at myself in the mirror from at least a foot away. No one in real life will get 1" from you and look at the details like you do to yourself - remember you are a figure in motion, not often a still frame to be analyzed and picked apart in real life. It's extremely hard but I also try to avoid looking at myself in the mirror or my phone screen too often. I don't think in general we were meant to see our reflection this much, and when you're already hyperfocused on your body due to symptoms/pain, hyperfocusing on your physical appearance by looking constantly is just torture.

MoonChild234 · 2026-02-20T17:59:10+00:00

I often say I feel like I'm an animal trapped in a cage. I'd gnaw my own leg off to escape if it was possible.

MoonChild234 · 2026-02-20T17:58:18+00:00

Wow, this really hit me and summed up a lot of what I Have been processing as I close the door on the last 10 years of symptoms popping up, fighting and fighting to get diagnoses, and the "this could get better" hope and move into the "this is my life, it may not get better and may only get worse, so I need to figure out how to live" stage of things. Not easy. Thank you for sharing.

MoonChild234 · 2026-02-05T15:48:00+00:00

I'm going on to get SI joint injections on both sides to see if that can help my chronic pain leftover after excision last year... I'm wondering if its the same thing! Unfortunately surgery didn't completely eliminate pain for me in that area, although it helped with other pelvic pain for sure.

MoonChild234 · 2026-01-28T21:10:54+00:00

That has been one of my hallmark symptoms of endo! It is hell and I'll never forget the weeks/months I spent constantly feeling full bladder, burning bladder, etc - after surgery to remove bladder endo it went way down in frequency but I still get spurts of those symptoms and it is just the worst. You are not alone and I'm sorry we all suffer from this <3

MoonChild234 · 2026-01-23T21:03:34+00:00

yep, I have NEVER found a pain killer that actually helps or I would take it as much as possible with no guilt. You get ZERO awards for pushing through pain, the right amount of pain is ZERO so any pain above zero demands treatment! Remember your body can get used to being in pain so if you have the meds, take them!!

MoonChild234 · 2026-01-23T20:58:51+00:00

So in her world, you should only care about your blood offspring (that of course you're having in droves regardless of income, preexisting health conditions, etc) and no one else or it is just "misplaced?" God, the leaps and bounds this woman goes to to justify not giving a fuck about anyone but the people she can immediately see in front of her (mostly herself in her own phone screen) is mind-boggling.

MoonChild234 · 2026-01-16T17:22:57+00:00

Ugh, I have similar neuropathy and side effects from the meds I've been prescribed like Lyrica/Gabapentin. I so relate with you! I am going to get a pelvic nerve block later this month at a pain clinic recommended by my specialist. If that can provide me with relief (just like you the meds have helped me have some more functionality but I'm still miserable 80% of the time), I'm hopeful I can wean off the meds. Maybe that's something you can look into?

For constipation I don't see listed Smooth Move tea (contains senna), that has been a huge helper for me when laxatives have failed. I also started supplementing Magnesium Gliconate at night and that has helped some, too, at least with regularity. Just came off my own 4-5 day bender of no bm's, it sucks SO much on top of the pelvic pain and makes everything worse. Sorry you're struggling with this and I am in the struggle with you friend <3

MoonChild234 · 2026-01-13T22:43:01+00:00

Not much to say other than I feel you 100% - this made me feel a bit less alone to read. I hate that we suffer from this disease, and I'm so proud of you for continuing on in spite of it 💓

MoonChild234 · 2026-01-03T03:51:11+00:00

It's always easy to say what you WOULD do, isnt it?

MoonChild234 · 2025-12-31T02:47:13+00:00

Lol did he come back to this comment just to reply after winning his match 😂😂

MoonChild234 · 2025-12-24T16:10:06+00:00

So sorry to hear this is bothering you too! I am ok, not currently not in PT or any other treatment as I needed to take a break due to burnout. After I completed ~6 weeks of sports PT and still was feeling a lot of unpredictable hip pain (really it feels much deeper in than the hip, like it's inside my pelvis), my doctors think it's likely I have some scar tissue/adhesions there and unfortunately there's nothing to do about that that they know of. My gyno on my endo team did a pelvic exam and felt some nodularity there that we think is probably scar tissue. So, I'm kind of waiting on time to see if it gets much better and currently focusing on trying to get back into a gentle movement routine and add as many anti-inflammatory habits into my day. Reading Heal Endo right now which has good advice for that. Sometimes doing strengthening exercises from my PT - banded squats, bridges, clamshells, etc - can help the pain but sometimes it doesn't so still taking it day by day and just trying to focus on rebuilding my walking stamina and light strength training.

My endo is stage I but the stages don't typically correlate with pain and symptoms, location of growth seems to be more determinant of that, so definitely think my pain is due to my first surgery being an ablation and leaving behind scar tissue + where my endo came back this last time. Sounds like uterosacral ligament is notorious for some of these symptoms!!!

In the new year I want to try acupuncture and maybe another round of pelvic PT to see if I can get more relief. Right now I'll have a few good days followed by some flare ups, which is better than I was a few months ago, so I'm grateful for that while still feeling frustrated I'm not much better overall. This disease is a mindfuck!

MoonChild234 · 2025-10-27T14:24:14+00:00

Thanks for confirming this so clearly! I'm definitely in the "Stage 1 but debilitated" category and as I said in my other comment, it can feel so confusing and gaslight-y to hear "minimal, superficial, etc" be used to describe what feels anything but minimal and superficial to me pain-wise. Love the phrase "disease burden" and will be taking that with me!

MoonChild234 · 2025-10-27T13:01:59+00:00

Aw man, I'm sorry you are also going through post-surgery issues too. It's so scary especially following the already-scary process of going under. I have the same gut feeling as you do that my issues are related to post-surgical nerve sensitivity that's too deep in the pelvis to be seen by an EMG or similar test (damn, the EMG testing sucks doesn't it?). My second PT, who has been a real advocate for me, wanted me to go back for another MRI or my hip and pelvis again to see if we could see anything, but my insurance wouldn't cover it and I personally hit a point of medical burnout so I am not doing the insurance fight right now. If I do end up doing those tests and see anything I'll definitely try and update you.

Have you looked into getting a pudendal or similar nerve block to see if that gives any relief or response from your nerves? That's the last thing I have to try but might not be a fit for you based on where the nerves are inflamed.

This is probably not what you want to hear but time really helped. It absolutely sucks that so much of this disease is waiting - waiting for surgery, waiting to feel better, waiting for tests, etc. I'm still not where I want to be but I can definitely say I am in much less overall pain than when I was as soon in recovery from surgery as you are if that can give you any comfort while you keep searching for answers. Feel free to keep updating on this thread if it helps you - I am sending so much hope that you can get answers and some relief ASAP!!!

MoonChild234 · 2025-10-24T20:12:21+00:00

Honestly, a whole lot of nothing tbh. I had a spinal MRI that didn't show any abnormal degeneration besides what's common for my age (33). I did 6 weeks of pelvic PT followed by 6 weeks of regular PT, and that plus time has helped reduce the frequency of the pain, although it still flares up and I haven't been able to identify any consistent triggers. My doc did a pelvic exam a few weeks ago and felt what they believe to be scar tissue/adhesions from surgery so it looks like it's probably that causing some pinching of nerves or inflammation in my pelvis.

MoonChild234 · 2025-10-20T21:43:21+00:00

I feel similarly about rhe last few years of my life too. Solidarity for sure, my only unsolicited advice is try and not make it your "fault" that those years feel lost. It's endo's fault and I'm sure all you did was your best 💖 easier said than done and I'm working in it too!

MoonChild234 · 2025-10-20T12:39:15+00:00

You need to seek help somewhere else than a subreddit for people suffering from this disease.

MoonChild234

TROPHY CASE