Should I cancel my surgery? Lost confidence... am scared

[JFT]

Hi,

I need feedback. I'm in urgent need of a full hysterectomy (removal of uterus, fallopian tubes, ovaries, scraping of tissue from outside uterus, removal of cervix and part of vagina). With two other added issues that I don't quite understand - colon resection apparently to be done at the same time and bladder / ureter stents done as part of it. I have no idea why, this has not been explained.

I am allegedly on a 4 week urgent pathway and have already 'passed' my pre-assessment. I want this done as I'm in chronic pain, daily non stop bleeding and recurring kidney infections.

However I'm so completely confused and baffled as to the strange antics of my consultant surgeon and her point blank refusal to sit and meet with me in her pre-booked appointments (her evasion tactics have been truly laughable). Suffice to say I've only ever had maximum of four minutes of conversation with her over the space of months. I've completely lost confidence. She's given me no description of the surgery or how it will be done or what the implications are or the recovery time or needs. And she refuses to write down her diagnosis and recommendations. Saying 'she doesn't write'.

Well I can't decide if she's an eccentric genius, autistic, profoundly mentally unwell, burnt out, overworked and underpaid or losing the plot. She looks tired and her behaviour is Whack!

The hospital admin team are even worse and told me today that I'm booked for an outpatient laparoscopic hysterectomy at a hospital quite far out of London (I'm central) instead of my local hospital. I feel fobbed off and it's all about the cost cutting again. I asked for confirmation that the Cons Surgeon will be the one doing it and they said they can't say. It's all so obscure and unclear and I'm literally scared for my life now.

I was taking all this in my stride but now I can't take it a minute longer AIBU to pull out of a scheduled surgery as I don't feel any trust for any of the medics invovled? The admin is bizarre, I'm not getting any information. I've already been injured in one botched procedure, I'm not walking straight into another. I'm getting red flag after red flag. AIBU or over anxious or taking self too seriously is my worry?

That sounds an awful situation. Can you talk to your GP and ask them to explain what is going on and what to expect? They might be able to speak to the consultant or could you ask for a second opinion?

That sounds really poor. Can you ask to be seen by someone else? You’re entitled to a 2nd opinion, and maybe another consultant will be more communicative. Don’t go into surgery without having the procedures involved properly explained and having all your questions answered.

I’d use a different consultant. Had you been in the NW, I’d have very highly recommended a hospital here.
I hope matters improve for you. X

This sounds terrible OP, it must be awful for you. Please don’t cancel the surgery, but you must be provided with all the information about what it entails including the risks and benefits and recovery time before you can fully consent to the procedure. For something that sounds quite major and complicated I would say it’s reasonable to have the information in writing for you to read through and digest. As another PP has said, going via your GP may be one route, or you can raise your concerns via the PALS department at the hospital. I would include the fact that you’ve been told you’d have one procedure but appear to have been booked for something simpler. I too would push for a change in Consultant - it sounds quite specialised but if you are in London this should be possible. I wish you the best of luck and a smooth op and recovery.

You got a lot of suggestions for support on your thread yesterday?

The surgery around your pelvis, ureters and bowel is for advanced stage endometriosis.

YANBU, absolutely not being unreasonable. This is yiur body that is about to undergo major surgery....the physicians and all other Healthcare professionals have the responsibility to help you understand why the surgery is recommended, what will happen during the surgery, risks, and aftercare along with any side effects. I'd push my feet in HARD and not go on with the surgery unless someone sits down with you (or can explain really well over the phone). Since you are in pain, I'd show up at their office and not leave until you spoke to someone....or call and not get off the phone until someone answered all my concerns. I know that may sound batty, but no way would I trust a surgeon who couldn't at LEAST help me feel informed.

I wonder if there are two things going on here: your consultant’s odd behaviour, and understandable fear of very major surgery - ?

Re the firmer - I had very severe advanced endo (6 major ops in ten years) and had a full hysterectomy last year. It has been life changing - in a good way.

I don’t think I had truly appreciated the long term impact of severe pain, or how exhausted I was as a result, until afterwards. I had open surgery not keyhole and no morphine - and within 48 hours I was in less pain than I’d been in for years. I had it done in London and can give you the name of my surgeon - she works on the NHS and privately.

The poor communication and lack of reassurance from your consultant is awful. As others have said, go to PALS and ask for help.

Best of luck.

This is a serious surgery that is going to have lifelong implications. You can’t undo this once it is done.

The doctor’s lack of proper explanation and not making sure you understand why each piece is necessary means informed consent does not exist. I would request another appointment and be insistent this time. Get pushy if necessary about getting all you questions answered in detail. Bring an advocate with you if you don’t think you can do it solo. Even if you can be pushy, a second person can still help with asking questions and remembering the answers.

@JFT Hi OP.... you are right to be confused. I work in theatres, can I ask you a few questions?

1. did you sign a consent form? as that should include all the relevant info and you should get a copy of that.
2. have you not received any letters from the hospital? they should include the diagnosis.
3. when is the lap hysterectomy scheduled for?

the initial procedure you described is very aggressive and is usually only used for Gynae cancers with local spread?! so very unlikely for you as they would have told you and you would have been tee'd up for radio/chemo.

if you haven't already, please speak to PALS. please ask your GP surgery for copies or all letters from the hospital as you may have not received them all. also you can speak to the preop nursing team or ask to speak to the anaesthetic consultant leading the preop assessment clinic (they always have access to one).

NO ONE (unless they are unconscious and its an emergency) should have surgery without being fully aware of the diagnosis and the potential risks and benefits.

feel free to PM me if you need any further help.

Thank you for this info and for your offer of further help.

My gynae probs are: adenomyosis, several large fibroids inside the uterus and in the muscle wall, PCOS on my left ovary, another problem with left ovary that showed up on MRI, my CA125 is persistently in high numbers, currently 96. And I've more lately (last two years) been having rapid growing polyps inside uterus.

This has all been going on for years. I was supposed to have laparoscopic investigation of my left ovary a few years ago but the Royal Free Hospital discharged me twice on false grounds (saying I have informed them I've taken private healthcare, not true). Then we went into covid situation and everything was up in the air.

My GP suggested to refer my case to a different hospital - UCLH. They said the first thing is to remove the largest fast growing polyp which they tried to do via walk-in hysteroscopy. I did not consent to that as they had deprived me of facts and information. I'd asked for it to be done via GA and they mocked me as if that was a ludicrous suggestion. I was severely internally injured when the gyna botched the procedure (they won't admit this but I've got a solicitor looking at the case) and felt internally stabbed as if I was being stabbed up under my ribs by a red hot poker. After the injury I've been left in constant daily bleeding, chronic pain, a problem with my left ureter / kidney, repeat re-infections. The UCLH went far out of their way to deny and cover up - even calling me a liar, mentally ill, and a drug seeker.

I was referred back to the RFH after refusing to continue with the UCLH. They removed the polyp in a 1hr 45 min surgery under GA and it came back negative for cancer. The consultant refuses to comment on what she saw inside my uterus or if there were injuries. She actually refuses to speak to me point blank as she is aware of the allegation that I was injured. So I'm under a consultant that won't attend her appointments with me or put anything in writing - a situation that can't go on.

I subsequently had scans and MRIs that show scar tissue all around the area where I felt injured and major adhesions between my uterus, left ovary, ureter, colon, etc - none of which were there before the hysteroscopy injury and I didn't have endometriosis before - all areas were clear, they had been thoroughly scanned. My insides in that area are basically all glued together now and connected with scar tissue. Ovarian cancer is still not ruled out and still very much ruled in. I've now been daily bleeding for well over 14 months.

The consultant who won't speak to me has stated major and extensive surgery is required (via four snatches of conversation that in total would add up to about less than 8 minutes over the last six months). Including full hysterectomy, colon resection, ureter stents, etc. She has refused to put this in writing or sit down with me and discuss it. She told me to tell my GP she 'doesn't write'. I was told my situation is urgent / nearly an emergency and would be booked in for surgery within 4 weeks. I 'passed' my pre-surgery.

Yesterday I chased up my surgery referral with the booking team and they told me it had been put in as a day clinic outpatient laparoscopic hysterectomy at a hospital far away. Obviously that can't be right and when I questioned it, they said they're now refusing to put the booking through due to the conflict in referral and documentation and my verbal account.

On reflection, I've decided to ask my GP to re-fer me somewhere else as I think the consultant is making it very clear she doesn't want to do my surgery. I don't feel safe and there's been so many red flags. I think there's been a serious f*ck up at the UCLH and previously at the RFH and she doesn't want to get landed with it. Also I think there's a strong possibility of ovarian cancer, as that was the original suspicion and my CA125 is persistently around 100 - 150 for a couple of years now.

I think I will have to start from scratch with a compilation of all my documents, scans, MRIs etc and hope that a hospital will be able to process me urgently.

I looked up the consultant reviews to see if anyone else had issues with her and although her private clinic reviews were all lovely, I came across a legal filing about an abs horrific case against her and it was one of the most disturbing things I've ever read. So now I don't want her to do my surgery anyway.

As far as I know, you don't get PCOS on a single ovary, so that's already a bit weird.

I agree with others - you should contact PALs. You need to be getting clear information, preferably in writing. Certainly, whenever I've ha to engage with a specialist, via NHS or private, I've always received some kind of summary of the consultation and the decisions taken. If you're not getting that, then there's a big problem somewhere and that should be fixed.

Thank you. Everyone I know of who has similar issues says the hysterectomy is the best thing ever happened to them, that even despite the surgery pain they woke up feeling better already. I just want this surgery done now but I fear the level of complications and possible other issues involved is making it almost impossible for the NHS to be willing to do :( That's my sense of it.

Oh, I didn't know that. It all started many years ago with my left ovary when I had a cyst 'the size of a tangerine' 10cm x 7cm and was in chronic pain for months / years even, it was there for years. They called me in for laparoscopic surgery to have it removed but all the prodding and poking from the examinations and tests must have burst it as when I went for the surgery they scanned me first and it was no longer there.

Ever since then, I've been regularly scanned and it's always been the left ovary described as polyscystic.

It was the scanning company In Health who said to me about how bad the adenomyosis and fibroids and large polyp had got and wanted to know why my GP / the hospital weren't offering surgery. That's when I chased it up and found out I'd been discharged on the grounds of going private! And that's when the absolute madness started.

I can understand that maybe the UCLH genuinely believed they could remove the large polyp via non sedated hysteroscopy in order to move things along quickly and do it low cost but frankly it's been the most horrific thing that's ever happened to me and I'm completely traumatised and left with injuries as well as my pre-existing issues. Worse it seems everyone's now too scared to pick up my case.

the consultant needs your informed consent for surgery. In order to get this you need to know

1/. What you are being treated for
2/. The suggested course of treatment / investigation / surgery
3/. The likely outcome of such treatment and possible side effects

Without that how can you consent in an informed way to someone hacking around.

The consultant sounds awful, all the consultants I have met with my dad, who has had at least a dozen ops have been very thorough in the explanation to us and the GP and have altered the treatment plan when dad said no to one procedure.

OP, I don't think you should go ahead with the surgery at this point given what you have said. You seem to have absolutely no trust in the surgeon and the team so if anything goes wrong (and obviously it could... there are risks with any surgery) you are immediately going to blame the surgeon.

Thank you for this info. It helps me gain clarity in a situation that to be honest, I know this is the truth. I can't go ahead with this surgery because nobody's discussing it with me, the opposite, they're refusing to discuss it.

I totally agree. I now have zero trust or confidence in the people that I'm being presented with. If they have my best interests in mind, they're doing a very good job of behaving like they don't. Maybe it's because they can't comment because of conflict of interest.

I have an awful fear that they're now attempting to fob me off to some poor innocent gynae team who will try to to perform a laparoscopic hysterectomy as if it's straightforward and then I'll be in serious risk of death. So. I cannot go ahead. I would be wrong of me at this point to volunteer myself for yet more injury.

I’ve had open surgery to remove my gynae organs and omentum. I’m really surprised that you are down for keyhole surgery to have so much work done. I don’t see how they can do so much. Something doesn’t sound right. When I was under a consultant, there was a specialist nurse available who could explain everything. That’s quite usual. Can you ring and ask to speak to a nurse in the team? I hope you get some answers.

I can't speak for the behaviour of your consultant but I will say that if they say you need all of that then get it done asap.
I'll be thinking f you: pls come back and share your recovery.

Ask for a choose & book referral to your nearest private hospital, the NHS pays. Have a good Google or ask for recommendations for a consultant. You will get proper full appointments with your consultant & they will do your op, no registrars or juniors.

Thank you I will research this.

A quick google and it seems to be that Choose & Book is defunct now but that was just a brief foray. If anyone reading this knows a link, please post?

I'll keep trying. I'm in so much pain it's making me cry and I can't live like this, it's been since July 2022 that I was injured and I'm just being fobbed off even by my own GP it seems.

UPDATE: For everyone who was kind enough to comment / make suggestions, thank you.

My issue has been mostly resolved, I hope.

I rang my GP urgently as was in total despair. Spoke to diff doctor than my usual which seems to have helped, now wonder if usual GP is in fact not helping.

Other GP made some enquiries and also suggested therapy and Crisis Team which was helpful.

I emailed PALS in whome I had zero hope invested in but they actually responded within a couple of days.

The upshot, I got an urgent appt with a Cons Gynae at my local hospital. She was helpful, a straight shooter. She explained my surgery can't be described in advance as nobody knows quite how extensive it's going to be until they've opened me up. Well that finally makes sense.

I may not be able to have the procedures done keyhole / laparoscopic in the end but they will 'look around' first via keyhole. I may need one or two bladder stents. I may need an urgent colon resection. I may need other stuff doing as they go along. All appropriate surgeons will be to hand on the day and they've got it completely under control (allegedly).

The booking at the far away hospital for outpatient day surgery was an error. Well good job I didn't just go for it then! I can have my surgery in my local hospital and I'll need to be in for a few days or longer depending on the extent of what gets done.

She answered all my questions, including awkward ones such as where will my vagina go to and would I be able to have sex with a man if I wanted (answer: vagina will be only about 1 cm shorter than present and should not be an issue for penis sex).

She kindly drew a diagram and told me all that will definitely not be there after surgery and what else may possibly be gone too.

She put me back on the urgent surgery referral list - allegedly within 4 weeks although they can stretch to 'up to three months', I'm hoping that won't be the case.

I feel faith restored for the time being. I suspect my surgeon does not have good communication skills and speculate that maybe some surgeons are far better dealing with anaesthetised people than awake people. Hope so.

I think some consultants would regard it as a weakness to admit that they’re not really sure what they’re dealing with. Most people would far and away prefer an up front ‘we won’t know till we take a look’ discussion, rather than a vague ‘you don’t need to know the detail’ fob off. Thank goodness you got a straight talker in the end!

I hope all goes well for you, op, and you make a swift recovery. All the best.

Have not RTFT but I had endometriosis (it transpired after mystery ovarian "tumour" resected and was a fatty cystic lump).It came to light when it had grown to push on my left ureter (emptying channel for kidney), blocking it and causing bad infection. Once the infection had gone and after many different scans and multidisciplinary team debates, they went on to operate. I was warned the tumour might be interfering with colon also, so a colorectal surgeon would be present with gynae surgeon in case needed (it was not). There later followed more minor procedures to deal with renal system problems and ultimately affected kidney did not recover but all good now. At every step of the way everything was explained to me by every specialist and I was given plenty of opportunities to ask questions. This was in the NHS.

Sorry OP, just read your most recent post and glad you are getting the right treatment. Wishing you all the best.