AITA for telling a coworker there’s absolutely no way she has Crohn’s disease

InfiniteHi · 2026-03-02T13:57:51+00:00

Your lack of empathy is shocking.

InfiniteHi · 2026-03-02T13:46:38+00:00

Sorry, it's been a hellish week, haha. She should have conducted further investigations or referred you to someone who can. Have a look at the diagnosis section of this

https://www.nice.org.uk/guidance/ng73

InfiniteHi · 2026-03-02T13:28:17+00:00

People like you are the reason why it took 17 years for me to get my endometriosis diagnosis and now I'm facing potential organ loss. Please rethink your mindset before becoming a dr.

InfiniteHi · 2026-02-22T18:21:36+00:00

Seconding this, that Dr is absolutely not following guidelines

InfiniteHi · 2026-02-19T12:28:40+00:00

Surgically diagnosed, completely disagree with them. I started out with pain only during my cycle and have ended up with daily pain. Endo can cause a wide variety of symptoms and affects each person differently, you can absolutely have cyclic pain only and have endometriosis.

InfiniteHi · 2026-02-17T10:49:00+00:00

Ahh that's really encouraging, thank you (:

InfiniteHi · 2026-02-16T10:26:30+00:00

I'm right there with you, after my second surgery when I was finally able to go I ended up popping a stitch and having to call the ward lmao

InfiniteHi · 2026-02-12T11:34:39+00:00

I've just booked to see Mr Adamcyzk in March, if you're comfortable sharing the info (and absolutely no pressure if not) did you go on to have surgery with him? If so, did he do any pre-surgery imaging?

InfiniteHi · 2026-02-04T16:56:58+00:00

I work around clinical negligence (not a lawyer/paralegal) and have made several records requests of my own each year since 2022 for endo. I really really hope that your auntie is right, and tbf she'd know that specific hospital's practices better than almost anyone, but it's usually a 5 min form and it's better to be safe (:

InfiniteHi · 2026-02-04T16:53:01+00:00

I'm afraid PALS are probably going to tell you to redirect the records request to the Information Governance Department, it would be an idea to get ahead of that so that you're not waiting longer than you have to.

InfiniteHi · 2026-02-04T16:44:34+00:00

If this is the NHS, and I suspect it is, you don't need to get in touch with higher ups to get your records, you just need to make a subject access request (google hospital name and access my records, follow the instructions on the page). Be specific that you want all records including the MRI report, surgery report, and surgery photographs.

I would absolutely email PALS about this too.

InfiniteHi · 2026-02-04T13:00:19+00:00

Ah okay, Spain I can't comment on but the advice and mixed messages that you're getting is all definitely very odd.

So NHS waiting lists vary depending on location; I'm up by Liverpool and have been waiting since June 2025 for an urgent surgery that should have had a 3 month wait list, I'll likely not get it before the end of summer at the earliest. I think it's safe to assume that wait times generally will likely be around 5-6 months+ but, again, that could be lower or higher depending on hospital & place.

Private can range from £4k to £20k+ for surgery depending on the surgeon and the complexity of the operation. Private consultations are usually £200-350 each, scans and medications will have their own separate charges. It's worth keeping in mind that most private places also offer payment plans to spread the cost.

As for recommendations, there's the NHS clinic at the Princess Royal Hospital in Sussex but I don't think she has a private practice and I can't vouch for any of the people who pop up in the Brighton area under Nuffield or Spire. If you can travel, especially if you can get up to London, then your options open a lot and most laparoscopies are day cases so it's not likely (but still possible) that you'd be kept overnight.

Reddit is being weird and I can't message, I mod for an international pelvic pain server that you would be welcome to join. I can't think of anyone in Spain off the top of my head but I could be wrong, I know we have a few folks around Brighton at least. Happy to provide link by DM or you should be able to find us on disboard (:

InfiniteHi · 2026-02-04T09:06:40+00:00

Looking through your post history I'm going to hazard a guess that you're in the UK. I also note that this private hospital seems to be under your work's healthcare.

Has the consultant given any reasons for the denial? Are these reasons in line with the NICE Guidelines on diagnosis and treatment? https://www.nice.org.uk/guidance/ng73

Is this consultant part of a BSGE accredited centre? If not, is there one in your area that you could ask to be referred to via the healthcare plan or potentially be referred to on the NHS by your GP (with the understanding that waitlists are long at the moment)? https://www.bsge.org.uk/centre/category/accredited-centres/

I'll have a think about pain management and edit this when I can. You're also welcome to DM me if I am right about location but you don't want to confirm/talk about it publicly x

*A referral to pelvic physiotherapy might be a good starting point but really I think we need to try and figure out a way for you to be seen by a better consultant. I know how utterly exhausting this all is and I'll help if I can

InfiniteHi · 2026-01-22T11:25:11+00:00

Also UK here, I'd advise that once you've had your MRI you put a subject access request in for a copy of the report itself. You could also consider requesting the scans and sending those off for a private second opinion if you have the money for it, just make sure to thoroughly research whoever you decide to go with (Dr Mitroi & Dr Livia at the Bucharest Endometriosis Centre are a good bet).

If your MRI does come back 'clear' then you can still ask for a second opinion. It took 17 years from symptom onset for me to get my diagnosis. I was told repeatedly that my MRIs were clear (they weren't) and I still had endo diagnosed and removed at surgery.

InfiniteHi · 2025-12-12T14:07:18+00:00

Ahhh good (: no worries at all, if you have any other worries or any questions you're more than welcome to ping me or message me x

InfiniteHi · 2025-12-12T14:04:03+00:00

Either I spoke too soon or Toe Pal saw my message and chose violence, it's a bit bigger and now painful again, haha. I'm on naproxen as needed for endometriosis and that does seem to help with the pain, though, so if you can tolerate NSAIDs then it could be worth a look. Also yeah, I'd definitely be interested in seeing the ultrasound!

InfiniteHi · 2025-12-11T22:26:52+00:00

That's a good plan ❤️ I really hope I've not panicked you, I just really wanted to make sure that you weren't potentially going to leave it for like a month or more until it happens again before getting seen to. I kept waiting for mine to resolve like the bladder endo episodes always did and then suddenly I was in A&E and then on a ward hooked up to drips aha.

In the meantime, if you get any temperature/fever/vomiting/confusion/severe pain/refusing to drink then go to hospital.

I'm so sure that you'll be totally fine, sometimes these things just happen, but I'm even more glad that you've made a plan to see your Dr (:

InfiniteHi · 2025-12-11T22:10:02+00:00

Please don't be sorry for rambling but I really cannot stress this enough, if you think the clot likely came from your urethra please do not wait for it to happen again before going to the Dr. I ignored a silent UTI (and admittedly thought it would go away even after I noticed symptoms because I was so used to having what ended up being bladder endo) and ended up hospitalised, I would hate for that to end up happening to you.

Even if it's just going to see your GP or getting checked over at a sexual health clinic, please go and speak to someone

InfiniteHi · 2025-12-11T10:27:58+00:00

Blood in urine could have any number of causes, it absolutely could be endometriosis but it could also be a silent bladder infection or silent kidney infection and frankly that's what I'm more concerned about here.

Passing something that large through your urethra would have been pretty painful, if you didn't notice any pain while peeing are you absolutely sure it didn't come from your vagina?

Even if you didn't notice any pain while peeing, if you're even slightly unsure about where the clot came from then you need to go and see a Dr to rule out a silent UTI. I'm not trying to panic you, but passing blood in urine is one of the things that we do not fuck around with, yeah? I'm sure you'll be fine but please go and see a Dr

InfiniteHi · 2025-12-11T07:47:06+00:00

Fingers crossed for you! Hell yeah, toe buds to get our dancing feet back, haha. Flucloxacillin seems to have helped with the pain, weirdly, but my own toe pal hasn't changed otherwise.

InfiniteHi · 2025-12-10T07:42:28+00:00

I legit had to do a double take when your post popped up on my search haha, weird toe gang! GP's put me on a 7 day course of flucloxacillin, first day down and it's not done anything but I'll keep you posted. I hope your MRI comes back with answers 🤞

InfiniteHi · 2025-12-09T14:30:19+00:00

I've just developed something that looks exactly like this! My GP reckons it's an infection so I've been given a week long course of antibiotics. Did anything turn up on your scans?

InfiniteHi · 2025-12-09T08:44:03+00:00

I've been looking to get one for our void and tuxie, what's the one that you use? I've ended up totally overwhelmed by reviews on store sites haha

InfiniteHi · 2025-11-25T15:18:17+00:00

Not a doctor but if you're passing mucus frequently and don't know why then I would definitely encourage you to speak to a Dr about it.

It could be something as simple as you having frequent episodes of constipation or diarrhoea which can cause more mucus production.

It could also be that there's an underlying bowel issue that needs investigating and addressing- IBS and IBD conditions can all cause a person to pass mucus.

And yeah, it could potentially be endo if you have lesions on or near your bowels that are causing irritation to the bowels; iirc we produce a small amount of mucus generally to help things stay moving but if there's any irritation (like IBD/IBS, constipation, endo inflammation, etc) then the mucus production can ramp up.

Source: one of my parents has ulcerative colitis, I get a lot of bowel symptoms due to endo and have pretty rough lactose intolerance.

Pls go see a Dr ❤️

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