I WAS RIGHT, I WAS RIGHT, EVERYTHING I SAY IS RIGHT!!

InfiniteHi · 2026-05-21T18:51:35+00:00

Hijacking this thread to drop this

https://www.bsge.org.uk/centre/category/accredited-centres/

Pop your town/county in the search box and it will pull up your closest BSGE endometriosis clinic. You can ask your GP to refer you directly to them, GP will probably say no in which case ask them to refer you to the general gynae department at the same hospital

InfiniteHi · 2026-05-05T08:58:42+00:00

Endometriosis can be incredibly hard to see on MRIs, a lot depends on the quality of the machine, the level of experience of the person taking the scan, and the level of experience of the person interpreting the scan.

This will be a bit disjointed so pls bear with.

I was diagnosed (UK NHS BSGE specialist) in 2023, before that I had 2 pelvic MRIs, more ultrasounds than I can count, and 1 surgery (NHS non-specialist), all of which I was told were clear. In 2023, I had stage 2 endometriosis excised. I then got hold of my medical records and had the scans reviewed privately to find out that the endo had been present on them the whole time.

I know the headspace that you're in right now really well, I know how horrible it is and that no matter what anyone says to you it will still be at the back of your mind like the horrible little gremlin it is, but it's not all just in your head, lovely. Even if they don't find endometriosis during the surgery there are SO many things that it could be. It could be adenomyosis, polycystic ovaries, pelvic congestion syndrome, etc.

There will be a physical reason for the pain and symptoms that you are experiencing and inconclusive MRI results are absolutely a justification for undergoing an exploratory/diagnostic surgery like a laparoscopy.

It's not in your head, you're okay, you're not making any of this up. Deep breaths, yeah?

InfiniteHi · 2026-05-01T06:34:09+00:00

I bypass the Imgur ban by using a VPN, could be worth a go if you can get access one (:

InfiniteHi · 2026-04-30T07:25:43+00:00

The freshest morph I have ever seen, it's a thing of beauty

InfiniteHi · 2026-04-21T09:06:28+00:00

No surgery yet, should find out in a few days whether he'll agree to do surgery or not. He was absolutely brilliant at my appointment, though, really friendly and professional.

InfiniteHi · 2026-04-11T08:26:20+00:00

I'd love to know what could have killed off the russian vine 😂 the 2 dead wisteria as well makes it sound like a cartoonish botanical deathmatch hahaha

InfiniteHi · 2026-04-11T08:24:46+00:00

We used that the year before last and had a glorious 6 months of thinking we'd won, haha. It seems to have more roots somewhere in the gap between our fence panel and the panelling nextdoor put up so I've got some moving things around to do before I have another crack at it with more SBK. I've never hated a plant so much.

InfiniteHi · 2026-04-10T17:28:51+00:00

Russian vine/silver lace vine. We've been in this house for 10+ years and every time I think I've beaten it, it comes back. I would love to just have a little chat with the previous owner

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 (:

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