Hysterectomy next week and no idea what’s staying or going

[Polkadotdash]

I’ve been on the waiting list for nearly a year. When I saw the consultant last summer she was vague about whether she would take my ovaries and cervix too. I wrote to her in February this year to ask for clarification. I was promised a response. I’ve heard nothing. I also have a cystocele and a rectocele which I don’t know if they are going to repair during my surgery. Ive now been given a surgery date of 21 May. Had my pre operative assessment today. They couldn’t answer any of my questions either. I keep ringing h the consultant’s secretary to ask what to expect but never get a call back. What should I do? Would you cancel if you didn’t know what they were planning to take/leave? Should I keep my ovaries or not? It feels like such a big decision that I don’t really want to leave until the day of surgery to make.

Write a formal email to the doctor, the department and to the hospital PALs/complaints team. You can not turn up for surgery without knowing what is going to be removed and the consequences of the removals. Did you sign anything in your pre-op? How can you give consent if you are not informed? Tell the hospital complaints team. I know it's daunting with how long it takes to get appointments but surgery without proper details is really unacceptable.

I haven’t signed anything. No consent forms were given to me at the pre operative appointment. I’ve written, emailed, used the hospital app messaging system, called the secretary. Still nothing. Am I being out of order to expect an answer? I feel like the responses I’m getting are ‘don’t worry. It will be sorted out’ But there is only a week to go.

No you are not out of order. It is unacceptable.

I would be emailing all of the above and would possibly include the director of the hospital as well until I got an answer. I would also be phoning daily - until I received the required information.

I’m now thinking I will just cancel it. Although I’m not sure how I can tell them I’m not coming since they don’t answer any form of communication.

When I was in hospital the dr came round before the op and discussed with everyone what to take (there were 4 of us having same op)
If you can, keep your ovaries and cervix. Then you will keep your hormones.

@Disturbia81 Had you had that conversation with them before you got to your surgery day? I don’t want to just rock up and say ‘yeah do it’ on the day. I kind of want a steer beforehand. I really feel like the hospital don’t care (I know I’m just another uterus on a long list of decrepit uteruses to be removed) but it does not fill me with confidence that I will be looked after.

They told me to think about it myself in the months beforehand and then we’d discuss it in the pre-op. It was totally up to me.
Best thing I ever did having my womb out!!

Did you keep your cervix and ovaries?

Yes both healthy so kept them. It’s a bigger change having those removed too as plunges into full on menopause with no ovaries and sex can feel different with no cervix, but obviously if they were diseased etc then it’s necessary to get them out.
But just having womb out has only brought positives for me! No periods, bloating, aches, pains, no pregnancy risk. Not one negative

Are you having an open procedure or a vaginal?
If vaginal hysterectomy you’ll keep your ovaries but cervix will go.
Cant see why they leave your cervix.
You will have been allocated an operating slot, longer for open procedure so they must have an idea what they are planning to do.
The cystocele/rectocele repair is a vaginal procedure so won’t occur if you are having an open hysterectomy with tubes/ovaries removed

@lovelydayss I’m having an open procedure as my fibroids are so large. I want to keep my cervix if I can because I’m terrified of a future prolapse and I want the cervix to provide some structural integrity. No idea on whether to keep ovaries or not. I don’t want future cancer risk but also do not want to crash into menopause next Wednesday either. That doesn’t sound great about the non opportunity to fix my rectocele etc. I’m really worried about that getting worse post hysterectomy

I am absolutely horrified at this. What the hell are they doing, not communicating with you? This is such a serious operation. How dare they treat you like this. It's outrageous. I would be contacting PALS immediately.

How old are you @Polkadotdash? That could make a difference in people’s recommendations re cervix and ovarian removal.

I had everything removed via keyhole surgery. Recovery wasn’t easy and I am quite fit but am so delighted not to have to deal with periods, the pain, etc. I had been struggling with peri symptoms for a couple of years despite being on HRT and now my symptoms are much better. I still get a bit of brain fog but not the 30 or so other symptoms I reckoned I had!

@tiredoflondonbutnotlife I’m 50

@healthybychristmas it seems to be quite a common experience that you get booked in for a hysterectomy and then decide on the day what you want doing. I’m horrified by it all tbh. I may well cancel but tbh I don’t think it would be any different if I went back on the waiting list and tried to get an answer again. They just don’t care.

I had this. After two weeks of nobody answering me they cancelled the op! I ended up seeing the surgeon privately rather than waiting for months on the nhs then going back on the list. Don’t suppose that’s an option for you at this point? It is disgraceful that they treat women this way.

I had a total hysterectomy a few years ago. I have to say that having the discussion on the morning didn't bother me at all really. The biggest issue for me was the decision to have the op in the first place and to be honest I was just pleased someone made the other choices for me, I felt very overwhelmed by it all. I'd assumed I'd keep my ovaries as my consultant has suggested as much, but the surgeon advised against it so the lot went. I do not regret it at all, literally changed my life.

I see this as it’s your body and your decision. Prior to the op the surgeon had pointed out women’s differing views on losing their cervix. I hadn’t had a period for nine years and wanted (not needed as he clarified) to wave goodbye to fibroids. It was only when I was about to have the GA that I specified exactly what else I wanted him to take away. There was no pressure but I sensed his agreement. It was my choice, made exactly when it needed to be expressed. I wouldn’t worry if I were you.

In many ways I echo Jocky.

Tbh I would be willing to turn up with the view to cancel if they cannot communicate adequately what they want to do to your body.

I think in medicine a lot of them forget that the body they are talking about belongs to you and isn’t just a piece of pork chop they can do what they like with.

@margegunderson that’s terrible that they cancelled on you and then put you back on the list. I can’t afford to go private. I truly wish I could.

@Orangemintcream i really do feel like a pork chop on a conveyor belt.

when the interval between booking and operating has been a year they don't always know what things are going to look like on the inside/how things may have got worse/got better/changed in other ways so they may well need to examine you/find out how your symptoms are to go through the consent process properly. Ideally that would be in a clinic close to the operation date, but as everyone knows, clinic appointments are rather scarce in the NHS these days. It's not that unusual for people (of all genders, for all sorts of operations) to be booked and then the finer details are discussed on the day whilst going through the consent form, and of course there's the risk that if things have changed in that interval it may be that the planned operation isn't the right one/the patient wants more time to think and things get postponed.... it isn't great practice but the systems are struggling and the higher-up powers (this isn't a clinical decision, it's an economic decision), would prefer to take a punt that it'll all work out fine, but knowing there's a small risk of a cancellation. Medicine in the NHS is a conveyor belt these days and that's one of the reasons it's such an unsatisfying system to work in.

Have a look on the hospital website for the gynae department to see if there's a specialist gynae nurse. They are usually very helpful and supportive.
I second a previous poster's suggestion to contact PALS as the consultant should have discussed the procedure, options of conservation vs. removal of cervix and / ovaries plus getting informed consent.
Although others may be comfortable with making a decision on the day, that isn't giving patients time to make an informed decision about their procedure..

I know, so am l. Really can't see this happening if it was an equivalent male procedure, bet there would be discussions, pro's and con's explored. It's not reasonable it only being discussed on the day. What would have with HRT if you need that and want to do down that route?