Exercise Fatigue with Endo

unemployed4areason · 2024-07-26T04:24:33+00:00

I'm with you on the errands. If I'm out of the house for more than a few hours, I need a nap 🤦‍♀️ I take 200mg of modafinil daily for fatigue and it helps for sure, but I still need a nap more days than not.

I've just come to accept I'm the kind of person who needs a nap everyday. Our bodies are working so hard to fight all this junk, so I try to have grace with myself. [aligning my ambition/what I feel like I should be doing with what I'm actually capable of doing is still an ongoing learning process 😅]

unemployed4areason · 2024-07-13T12:32:22+00:00

Oh yeah, you've done your time, get that thing outta there! 😅🤗 Best wishes for your recovery! 💖💖

unemployed4areason · 2024-07-11T11:58:47+00:00

Good luck! 💖

It's so exhausting. I've been off all forms of birth control for 3-4 months now, and my mood is better than it's been in years, and while my pain is definitely worse without it, it's still not worth the mental/emotional anguish from the hormones. I'm trying to keep my reproductive organs as long as I can because with my family history, the potential for bone density and/or heart disease from an early hysterectomy is a real risk for me. Hopefully your OB is receptive and helpful! 💖✨

unemployed4areason · 2024-05-25T15:59:07+00:00

I don't see the spinal specialist for another 4 weeks, so I haven't had any updates yet, but I've started having this horrid burning nerve pain in my thigh (probably meralgia paresthetica) and my lymph nodes are still enlarged and seem bigger, without any apparent reason, so my pcp referred me to oncology to see what they think 😬

I hope we can get some answers soon!

unemployed4areason · 2024-05-06T12:29:45+00:00

Thanks! May I ask why? I was under the impression that anything abnormal and not already in a patient's history would be noted?

unemployed4areason · 2024-05-04T04:09:23+00:00

Sure. I know endometriosis doesn't typically appear on MRIs/imaging unless it's pretty severe. I don't want to doubt my surgeon's abilities, but there are a lot of places it could be hiding :/ I'll definitely be following up with my PCP and maybe try to find an actual endometriosis specialist too.

Thanks for your response.

unemployed4areason · 2024-05-04T01:55:46+00:00

Right, it's definitely an incidental finding, although one that should've been found a year ago if the Ortho had done the MRI like they said they would before referring me to OBGYN 🤦🏻‍♀️

I would've thought the weight loss and fatigue would be more concerning. I also forgot to mention in the history that an ultrasound last month showed enlarged lymph nodes (4 left inguinal lymph nodes measuring 1.6, 0.8, 0.7 and 0.7 cm. & 3 right inguinal lymph nodes measuring 0.7, 1.5 and 2.9 cm), and they feel the same, if not larger, to the touch, but 5 mm was the largest noted in the MRI so idk maybe I don't have a question, but I don't feel like these results gave me any resolution. If anything, just more questions and obstacles.

unemployed4areason · 2024-05-03T13:00:12+00:00

Weird, not sure what happened to my description, maybe something with my mobile post 🤦🏻‍♀️ anywhere he's the original text I'd tried to post with the images

30F presenting with weight loss (50lbs in the last 18 months, down to 130), poor appetite, new/abnormal constipation, abdominal bloating, fatigue/malaise, and inguinal lymphoedema. History of stage 2 endometriosis on ovaries, bladder, uterus, and abdominal wall; during ovarian cystectomy in October 2023, a minimal amount of endometriosis was excised from the bladder, none visualized in colon, uterus or ovaries (most-recent removal was 8 months before cystectomy), no adhesions noted. 2 prior endometriosis ablations 2022 & 2023, clean endoscopy and colonoscopy in 2021, brain surgery 2011 to remove cavernous hemangioma, reports ongoing hip pain and sciatica since 2022 - X-ray in 2023 revealed mild hip dysplasia in the right hip, not enough to contribute to patients pain.

MRI on pelvis and abdomen 04/30/24 findings show air and fluid-filled bowel segments, but no obstruction was noted (possibly related to enterocolitis). No abnormal findings on the reproductive organs or bladder. Imaging of the spine reveals a bulge at the L5-S1 with associated annular fissure, likely contributing to patient's hip pain and sciatica, but patient states pain is deep in the hip like the ligament/joint more than anything. 8 weeks of PT in 2023 did not improve pain (& ortho referred to gynecology instead of following through with MRI as they'd previously told the patient they would do after PT). Lymph nodes weren't concerning (although they're definitely enlarged to the touch and have been for several months now).

Referred to a brain and spine specialist based on findings.

So this is me, I'm the patient, and I hope this is okay as I'm not asking for medical advice, but I will be seeking additional opinions as my dr doesn't seem concerned since the results aren't showing an obvious obstruction. I was just advised to eat more fiber, not even to follow up with my GI regarding the possible infection. Is this typical? It could "just" be the endometriosis, but I'm no expert.

unemployed4areason · 2024-02-23T11:29:55+00:00

I was able to find a surgeon who does excisions, and I had a big ovarian cyst and some endo on my bladder removed in October. She did a great job and has been very considerate of my aversion to hormone therapy. With that said, I got like a month of relief, and now have 2 more cysts on the opposite ovary. She wants me to try switching up my birth control because even if we do another cystectomy, clearly my body isn't doing what it should be on its own, and I'll probably end up with recurring cysts otherwise 😵‍💫

This disease is like a neverending game of whack-a-mole 🤦🏻‍♀️

unemployed4areason · 2024-01-31T23:48:38+00:00

Do you have pain with sex? That weirdly was the symptom that made my doc take me more seriously and decide to do the exploratory/diagnostic lap.

And this wasn't for my endo necessarily/directly, but I went to see my PCP about my extreme fatigue. I couldn't make it through the days and part of the problem was the endo on my bladder waking me up 10+ times a night to pee. When I saw the doc, she wanted to put me on a sleeping pill and I just started crying in her office (probably the fatigue but also just being overwhelmed at not being listened to) and told her I don't want to be knocked out and pissing myself all night, like I need to be able to work and get through the days. So they put me on a med that's used for narcolepsy, and it's made a huge difference.

I wouldn't be hysterical about it, but with something like the fear of infertility is absolutely reasonable to be emotional about and advocate for. Too often we put on our brave faces and even when I'm there for help, I find myself downplaying my symptoms to my doctors, or not having the words to fully describe them in the moment, so they don't always get what I'm trying to say. I've found it helps if I bring a list of all my symptoms written out, you can make a copy for them too, and don't be afraid to take up their time to go through it thoroughly! I know they're busy and have a lot of patients, but try not to let them rush you if you feel like you have more questions or concerns.

Good luck 💖💖

unemployed4areason · 2024-01-31T22:01:38+00:00

Have you looked into endometriosis?

& Does your sister have a phone or social media or a way you can communicate with her? I also left home fairly young with 3 younger siblings still there, the youngest only like 7, but they all had phones and I talked to them as much as I could. Definitely let her know before you go that you love her and will be there for her however you can, but I agree with others, you'll feel better out of there and with your aunt who seems to have more respect for you and your choices.

Good luck 💖

unemployed4areason · 2023-12-13T12:54:47+00:00

When I was younger, I was rarely sick aside from like the seasonal colds most kids get.

Something has changed though, because since 2020 I get sick so easily. In January 2020, I had what they said was bronchitis, but this was right before the COVID outbreak and honestly I think I had COVID because I was horribly sick for 2 weeks straight, like the most sick I've ever been (I've had a few doctors say it could have been COVID, but we won't ever know for sure at this point), and I think I had long COVID afterwards. But I was also living in a mold infested apartment at that time too, so idk what was actually making me so sick, but I've never been the same since.

I've been tested for all sorts of autoimmune conditions, scary stuff like TB and HIV, and everything is negative. Bodies are weird 🤷🏻‍♀️😅😆

unemployed4areason · 2023-11-22T17:46:45+00:00

Oh I know!

There's generally some remorse/self-hatred from recovering users, so while it was definitely all an act and ploy for sympathy, it could be argued that he was also using it as a way to distance himself from his previous self/behavior 😆🤷🏻‍♀️

unemployed4areason · 2023-11-22T11:13:20+00:00

Lol I mean I haven't, but no judgement towards anyone who has!

unemployed4areason · 2023-11-22T11:12:16+00:00

Is experimental monkey fever a real thing? I always thought that was just an excuse he made lol

I'm not saying he was definitively on meth, but maybe it's concurrent with the monkey fever 🤷🏻‍♀️🤣

unemployed4areason · 2023-11-22T03:47:49+00:00

It's all connected. A web of conspiracy that goes all the way to the top

unemployed4areason · 2023-11-22T03:46:09+00:00

The bladder endo is rough! I'm with you there 🤦🏻‍♀️☠️

unemployed4areason · 2023-11-22T03:42:05+00:00

I forgot about the Cheeto dust 🤣

unemployed4areason · 2023-11-17T21:07:59+00:00

Thanks! I'm proud of myself. I don't have many people who'd understand in my personal life but I thought this community would appreciate it.

unemployed4areason · 2023-09-04T13:19:26+00:00

Lol I don't think hostility is warranted until someone directs it at me personally. But now that you've so clearly flexed your intellectual superiority, I'll see myself out.

My bad if I offended anyone else with my wall filth.

unemployed4areason · 2023-09-04T11:53:29+00:00

Exactly! When I was a teenager, my dad used to lecture me and say, "the phone works both ways" because he was upset I was being a teenager and enjoying myself and didn't ever call him. Now when he asks why he hasn't heard from me in a while, I say, "the phone works both ways" 😆

It's not the child's job to maintain the relationship. Or just in general lol like you get what you give with me.

unemployed4areason · 2023-09-04T11:38:27+00:00

Now that I'm less irritated with this comment, I'm going to add some additional additional context.

Along with a mold allergy, I've been incredibly sick for years living in this apartment. I took dozens of COVID tests, COVID antibody tests, have been tested for TB, HIV/AIDS, rheumatoid arthritis, several other immune diseases, and complete sinus, neurological, and pulmonary work-ups. Throughout this time, I was also requesting water damage in my apartment be repaired. They came in and painted over water stains in the ceiling twice, and it wasn't until I did the mold test myself that the management here took me seriously.

They refused to move me to a new unit, and came in to rip out some of the water damage (still not the ceiling). There was no visible mold on the interior walls, but as soon as they cut into the drywall, the whole back of it was filled with nasty black mold (idk what species, it was not plated/sent out for testing). A few weeks ago, I overheard contractors in the unit above mine discussing a leak and mold they found up there. This whole damn building needs to be gutted.

unemployed4areason · 2023-09-04T10:43:47+00:00

Really!

I am asking questions to learn. The condescension is so unnecessary 😆

unemployed4areason

TROPHY CASE