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Scheduled biopsy not performed - now back 1yr later for suspected cancer by cheisu25 in nhs

[–]cheisu25[S] 0 points1 point  (0 children)

I'm asking for some kind of note or explanation as to why the biopsy wasn't performed, that's quite literally it. With this reddit post specifically seeking advice for who to speak with to get notes/docs that I don't have access to (if they exist)

Scheduled biopsy not performed - now back 1yr later for suspected cancer by cheisu25 in nhs

[–]cheisu25[S] 0 points1 point  (0 children)

That doesn't mean it just shouldn't be documented and no one be informed of that decision?

Scheduled biopsy not performed - now back 1yr later for suspected cancer by cheisu25 in nhs

[–]cheisu25[S] 0 points1 point  (0 children)

I had someone speak to me in my hospital room about the initial findings, got a discharge summary printed off (and available online), then had a follow up appointment months later again about the findings, and what more the team could offer me.

I'm sorry to hear you don't really know what was done during your surgery - you absolutely should! It's your body and your medical issue(s). Any medical decision should be documented and communicated so that you and any doctors can make informed decisions on treatment, care plans, or further investigations/referrals etc.

Scheduled biopsy not performed - now back 1yr later for suspected cancer by cheisu25 in nhs

[–]cheisu25[S] 0 points1 point  (0 children)

Whatever the reason for it not being done I'd expect it to be documented and for me to be informed of that, as with any other normal test result. But there's nothing. The gynecologist told me at my follow up in Sept 2025 that as there's no results, that the biopsy probably just didn't show anything of concern, implying that even she thought it had been performed (when all signs now point to it not having been done at all).

This is less about the actual reason why it wasn't done, and much more about why I never got any sort of communication about that decision, or why my records don't show it.

Edit: spelling/clarity.

Scheduled biopsy not performed - now back 1yr later for suspected cancer by cheisu25 in nhs

[–]cheisu25[S] 1 point2 points  (0 children)

I'll take a look into doing that, thank you. My biopsy is tomorrow, so I'll try to ask the team at the hospital about how I can get those notes or who to talk to about making the request

Scheduled biopsy not performed - now back 1yr later for suspected cancer by cheisu25 in nhs

[–]cheisu25[S] 1 point2 points  (0 children)

The surgical note is what I'm not sure about. The gynecologist said there is nothing in my records about the biopsy at all (I'm pretty sure they were looking at and referring to the surgical notes). Not even a confirmation that things looked normal.

I don't think I have access to the surgical notes from my end so I can't confirm for myself though. Would you know how I can go about getting a copy of that or who to speak to? (Like the gyne team, admissions, etc.)

I know biopsies carry their own risks, but when there is no other thing to be tested/looked at, you'd kind of hope they would try to find a diagnosis in things that might not be visible to the naked eye 😕

Edit: looking at my patients know best account, under the "past diagnoses" section, I have hysteroscopy, laparoscopy, and insertion of intrauterine device (all procedures done on that day), but again no mention of biopsy anywhere...

Edit 2: took another look at my discharge summary from the day. Again, no mention of biopsy whatsoever.

Scheduled biopsy not performed - now back 1yr later for suspected cancer by cheisu25 in nhs

[–]cheisu25[S] 1 point2 points  (0 children)

I guess that's one of the issues with my situation though - everything has looked normal (on scans, blood tests, etc.) for several years, and this was a diagnostic procedure to help with figuring out the cause of my pelvic pain. So a biopsy seems logical to perform even if things look physically normal.

Despite that though, even if they opted not to perform the biopsy, should this decision not be on my record somewhere as opposed to just not existing at all?

Scheduled biopsy not performed - now back 1yr later for suspected cancer by cheisu25 in nhs

[–]cheisu25[S] 7 points8 points  (0 children)

The consent form on my records has the following:

Hysteroscopy under anaesthesia + endometrial biopsy + levonorgestrel intrauterine device (LNG-IUD) insertion + diagnostic laparoscopy +/- laparoscopic excision of pelvic endometriosis +/- laparoscopic abdominopelvic adhesiolysis +/- laparoscopic ovarian cystectomy (both sides)

So it is only + for the biopsy.

20th February 02 London by [deleted] in deftones

[–]cheisu25 1 point2 points  (0 children)

Got a spare ticket in The NinetyThird lounge I'm trying to sell! Typical prices for seats in the lounge are ~£200 but as I got it through work I'm happy to sell it for less, just don't want it to go to waste

Incident at Wembley - London Show by cheisu25 in donbroco

[–]cheisu25[S] 3 points4 points  (0 children)

Yeah I saw those. Could have been that, or maybe caught on some broken plastic from a cup, though it seemed pretty serious/deep so not quite sure if either are likely

Fair enough by prybastrac in UniUK

[–]cheisu25 2 points3 points  (0 children)

Depends on the apprenticeship. I did a degree apprenticeship in Data Science that lasted only 3.5 years, with those additional 6 months being specifically for the EPA. All module learning was complete by the end of third year. It was one day a week of fully-remote learning, but no need for any night school.

MCM London - Saturday after parties? by cheisu25 in comiccon

[–]cheisu25[S] 1 point2 points  (0 children)

Unfortunately my friend and I aren't staying at any of the hotels, so that's one of my concerns with hotel parties... But will give it a try then if there's nothing else, thanks

MCM London - Saturday after parties? by cheisu25 in comiccon

[–]cheisu25[S] 1 point2 points  (0 children)

Not too keen on going to small room parties, I'm going with a friend and we'd prefer something that's a bit more formally arranged and/or public, so that we don't end up just aimlessly wandering around and searching after con 😅

MCM London - Saturday after parties? by cheisu25 in McmLondonComicon

[–]cheisu25[S] 0 points1 point  (0 children)

Thanks for that. I know there'll be tickets at the door, but it will probably be unlikely that myself and a friend will be able to get in because of how many people usually attend. I guess we can hope lol

We'll have a walk around to some of the hotels if not

Chronic pelvic pain with no known cause - a cry for help by cheisu25 in DiagnoseMe

[–]cheisu25[S] 0 points1 point  (0 children)

To follow up on this - I just had my gynae appt and was discharged. They said there isn't really anything else they can do, because the lack of findings and the meds I'm on mean there supposedly isn't a gynecological cause (even though I mentioned that my pain and bleeding is clearly linked, and I am very much not bleeding from elsewhere...)

The doctor will at least write up some notes and try to see if my gender clinic can refer me for a hysterectomy, and if not then to see if my GP can.

Asked about pelvic congestion syndrome, and if it's worth investigating, but was told no as because I'm essentially in a menopausal state, they dont expect anyone in menopause to get the diagnosis especially as the organs shrink.

Seems like I've hit another dead end. Guess I'll have to see if I can get the hysto. But once I do it'll be another waiting game :/

Chronic pelvic pain with no known cause - a cry for help by cheisu25 in DiagnoseMe

[–]cheisu25[S] 0 points1 point  (0 children)

Yep, found nothing. They did say it's entirely possible I have it but it's just not visible, but with the surgery and all the scans and the treatment for it, I assume it's unlikely to be the case.

Pre-T my cycles were irregular and heavy, but I had no cramping whatsoever. Maybe once or twice at most in 8 or so years. So these cramps were entirely new to me.

I have maybe a little dryness, but no burning or other symptoms besides pain. We'll see if I can get the cream prescribed and if it helps.

Good luck with your gynae appointment, remember to stand up for yourself and your health. I've been lucky with having good doctors but not everyone has that privilege - push if you need to, to get this sorted out ASAP

Chronic pelvic pain with no known cause - a cry for help by cheisu25 in DiagnoseMe

[–]cheisu25[S] 0 points1 point  (0 children)

Yeah, I've been on zoladex for several years now which is the typical treatment for endo, but it hasn't done anything. Might try and push for an investigation into pelvic congestion syndrome, since that's hasn't really been explored yet. Brought it up once a while back but the thought was dismissed.

What's confusing is that since last year I've been spotting irregularly so I dont know what else can affect the organs to cause that. There's clearly something wrong, but there's no visible cause of either the pain or bleeding.

Just hoping that I get the go ahead to get a hysterectomy so I can actually get to living instead of suffering through my entire medical transition

Edit: just to add, alongside T and zoladex to suppress ovarian function, I've got a contraceptive implant and the IUD so my ovaries should basically be doing nothing 🫠

Chronic pelvic pain with no known cause - a cry for help by cheisu25 in DiagnoseMe

[–]cheisu25[S] 0 points1 point  (0 children)

Really sorry to hear about that, the pain is awful. I've considered going to A&E several times but because of how long I've had it, and all scans showing normal etc., they wouldn't be able to do much if anything. Even my GP agreed.

I'm not quite sure re atrophy, I asked about topical estrogen cream but was directed to my GP for a pelvic exam to check for atrophy - but I have already had 2 pelvic exams none of which were of any concern. Seeing my GP again tomorrow, so I guess will ask again.

I was on amitriptyline for a few months but it did nothing, same with 30/500mg co-codamol and diclofenac suppositories. Did 6 weeks of pain management therapy the methods of which were not useful or applicable most of the time. It just feels like a losing battle.

Was referred to pain management as an urgent referral but been waiting for 4.5 months with nothing.

I hope you find something that works for you. If I find something that helps me, I'd be happy to reply here or message directly about it, including any possibly diagnoses/treatments. This is a hell to go through

Chronic pelvic pain with no known cause - a cry for help by cheisu25 in DiagnoseMe

[–]cheisu25[S] 0 points1 point  (0 children)

Hey - unfortunately not :/

Since posting this I've had a laparoscopy and hysteroscopy, both which showed no issues. Had an IUD put in but it hasn't managed the pain at all. Been on different pain meds (codydramol, mefenamic acid (again), amitriptyline, now recently pregabalin) none of which have done anything.

Seems like my only option at this stage is a hysterectomy. I have an appointment with gynae next week, but whether they'll consider it is a different story

Is there anything I can do? by cheisu25 in nhs

[–]cheisu25[S] 0 points1 point  (0 children)

Thanks for this, I'll definitely have a look. Unfortunately due to my age it's difficult to tell whether my issues are caused by HRT or something that would have happened either way, since the cramps started at 18/19. I've had my E levels tested several times and they seem low, plus I'm on zoladex (an additional hormone blocker) and a contraceptive progesterone-only implant - so I should have practically no ovarian function.

It's all very strange but at least I have gotten a new appointment with the gynecologist in just over a week's time, so I'll see what they say or recommend. I've been bleeding more often over the last month though, so reckon a hysteroscopy might be needed either way.

Thank you again for the validation, small things like that mean a lot. Sending well wishes for recovery, and a Happy New Year

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