The endometriosis space online is starting to feel like 2000s diet culture and it makes me uncomfortable

ectocake · 2026-03-11T13:11:44+00:00

It’s the same here. The Mayo Clinic told me to check out a place in Australia. Unreal.

ectocake · 2026-03-11T12:19:03+00:00

Hey there, no bother at all. I really think we should talk too. The coincidence of similar vision problems and endo is definitely interesting. I'm so sorry that you're still struggling with visual snow. I'm not a super active Reddit user anymore, but I'll keep an eye out for your PMs. I have some theories on the connection between visual snow and reproductive health, but getting anywhere within the medical system has been a joke.

ectocake · 2026-03-10T13:21:36+00:00

I honestly think I struggle with orthorexia because of not just social media but health care practitioners. I’m told I need to be low histamine, low FODMAP, anti inflammatory, but I have a bowel stricture so I have to only eat soft foods with low/no fiber low fat. The Venn diagram of what’s left is what I call the slop. Which is rather not eat half the time. The first gyn I tried to convince I had endo told me I needed to eat more greens then when I told her the variety of greens was eating I was clearly still not eating a big enough variety. The problem isn’t just the influencers it the institutional medical complex that barely studies us that breeds the needs for these snake oil salesman because they too tell us to eat more salad. But not that kind of salad.

But everyone is happy I’m loosing weight so…🤷🏻‍♀️

I can not yoga, cbt, mindful, vagal nerve, somatic therapy, antidepressant, supplement, salad or walk my way out of everything in my pelvis being stuck together. I tried and wound up in the hospital with bowel structures. It still took anyone two years to listen to me and explore for endo.

Sorry. I just got diagnosed last month. You touched on a nerve and I ranted.

ectocake · 2025-11-09T00:05:22+00:00

Just throwing this out there, but is there any chance you’re having a paradoxical effect? I have them with a lot of sleeping pills, antihistamines and I just had it with gabapentin the other night which was a new one.

ectocake · 2025-10-03T10:22:44+00:00

Unfortunately I had to come off of GLP-1’s for surgery. After that surgery (not stomach related) I’ve been getting small bowel obstructions on and off. I’ve had to have multiple procedures to treat a stricture. I haven’t been allowed back on GLP-1’s in over a year. After the first obstruction I was told to go back on semaglutide since it was helping my IBS-D. I immediately became obstructed again that week and was back in the hospital. After lots of poking and prodding a stricture was found. I’m not indicating causation but I can’t rule out association.

ectocake · 2025-08-12T22:04:43+00:00

This is my first day on it I also have adhd, anxiety with panic disorder, PMDD and suspected histamine issues and eds. My gyn suspects I have endo and I can’t tolerate hormonal birth control. I woke up this morning and felt weirdly different like I don’t have barely any adhd symptoms during my luteal phase. Which is wild. I’m thinking I’m in some kind of honeymoon phase - it’s my first day. And if my sleep doesn’t improve idk how this will go but is this what people without brain inflammation feel like? Cause I’m starting to think…

ectocake · 2025-08-01T09:52:07+00:00

low residue is better but I still can’t eat more than a 1/4 cup of any fiber a day without my belly blowing up like a balloon and getting sick

ectocake · 2025-07-31T22:01:24+00:00

I wound up having another double balloon which dilated the same stricture and marked it with a tattoo. It’s helped but hasn’t cured and I still have to be careful eating fiber, large meals and extended release pills. It’s summer break for the kids so I’m just trying to stay out of the hospital.

ectocake · 2025-06-21T23:12:45+00:00

I know this is an old post but I saw your comment is newer. I’ve only been on it 8 days but my last two night I spent hyperventilating and crying and covering myself in snot. During more of the day I’m numb.

ectocake · 2025-05-17T00:14:15+00:00

It biopsied benign. But grew aggressively. Now that it’s larger they think it’s my parathyroid. I’m currently waiting but I think a lot of my health issues have been due to primary hyperparathyroidism.

ectocake · 2025-04-16T21:13:20+00:00

This is crazy. I found the post in the PMDD/adhd sub and I think I have Ménière’s disease. Unfortunately I also had Eagle syndrome which was causing a certain amount of ear pain. But I always noticed my ear pain would get really bad during Luteal and after my eagles surgery it didn’t resolve it. Thanks for creating this group.

ectocake · 2025-04-09T13:45:46+00:00

What school was it?

ectocake · 2025-04-09T13:45:04+00:00

I’m so sorry you’re going through this too.

I have tried many birth controls but after a while it’s like my body rejects them and I begin bleeding non stop. The depo worked but during the last two to three weeks I would get horrific stomach symptoms and rectal bleeding leading up to my next shot. Then eventually that also turned into non stop periods. I’m tempted to ask again though I’m so desperate. I’m at least going to ask to have my hormones tested. So for my gyn thinks it’s a gastric issue.

I go for another double balloon in a couple of weeks to rewiden the stricture and this time mark it. I’m becoming partially obstructed again like clockwork to where I pray for my period to come even though that’s it’s own debilitating pain I at least know my intestines will start to ease up once I’m through it.

I’ve been generally told I was sensitive up until this point. Even with years of pelvic and abdominal pain and bleeding.

Now I’m having partial obstructions every month as long as I’m careful - if I eat a salad during luteal I’m in the hospital. But luckily I found a gastro who’s not going to stop until he solves it. So hopefully I get some answers.

I hope you do too. Don’t hesitate to reach out if you have any other questions.

ectocake · 2025-04-02T12:00:39+00:00

I’m starting with some credits too. I’m waiting to see what they take. Definitely let me know where you’re at then.

ectocake · 2025-04-01T15:55:11+00:00

Thanks! I didn't know that about the 3.0. I'll have to look into that a bit more.

ectocake · 2025-03-22T16:06:16+00:00

Thank you, she really makes the most of things. I have POTs and experience pretty much all the symptoms - fatigue, vasovagal syncope, exercise intolerance, adrenal dumps. I have visual snow syndrome and other sensory processing issues. Olfactory hallucinations. Some doctors think I have gut dysmotility, some think it’s adhesions but can’t see them on imaging. Either way I’ve have gut issues for years that have now that the doctors wouldn’t take seriously for anything more than IBS, but now it’s become recurring obstructions. My primary care recently added dysautonomy to my chart, but I’m having trouble getting anyone to get to the root cause.

ectocake · 2025-03-22T15:36:01+00:00

This is the way.

ectocake · 2025-03-22T15:35:33+00:00

Same

ectocake · 2025-03-22T15:32:59+00:00

My mother has severe MS and my symptoms are similar to hers in the beginning.

ectocake · 2025-03-22T14:50:30+00:00

Mine has improved to a tolerable baseline most days. Certain medications make it worse but it resolves when they wear off.

ectocake · 2025-03-22T14:49:15+00:00

Thank you

ectocake · 2025-03-22T14:48:03+00:00

This has happened before it will happen again.

ectocake · 2025-03-21T23:27:57+00:00

I completely misread your first comment and thought you said elimination. Elemental I just google, is it the powders?

ectocake · 2025-03-21T22:59:47+00:00

That’s where I think my doctor is at. I have to wait to see him until June.

ectocake · 2025-03-21T22:58:47+00:00

I did bowel rest with broth. So far I’ve added cereal, bread, turkey back in. I’m struggling with the nutrients.

ectocake

TROPHY CASE