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.

You’re not unreasonable…of course you need to know what’s being removed.

when I had mine I had the uterus and cervix removed and the ovaries left. It’s the ovaries that mean you’re still getting oestrogen and leaving these will mean you won’t have a surgical menopause. Removing or leaving these cervix is between you and the surgeon. Removing it means no need for smear tests and zero chance of cervical cancer. Afaik there are no major advantages to leaving it.

@Spidey66 i definitely want to kept my cervix for structural integrity. I do not want a prolapse in later life.

@Greybeardy yeah this is my assumption of how the process works. I’m struggling with the margins for error though in that process. And if something isn’t done correctly then I have to live with the consequences. I get that the whole thing is sub optimal for everyone involved. But I’m the one going home missing an organ.

@Polkadotdashwhat will be prolapsing though? (Genuine question.)

ps have googled, and answered my own question. I wasn’t really informed at the time.

@Spidey66 yeah, it’s a bit grim what can prolapse even if you don’t have a uterus anymore. Although I am told that the cervix doesn’t do much to support things now, so I don’t know. I just thought it seemed sensible to keep some structural support in there, rather than just having a cuff made of a flap of flesh. (There’s a lovely phrase for this evening)

I was given the choice but told them to take the whole shooting match. I figured these were just sitting there waiting to kill me. Going straight into menopause took the guesswork out of the situation. I went on HRT about a week after surgery. I’ve never looked back.

I’ve just had two calls from the hospital in 10 mins. The first one saying that because I had ‘unresolved questions’ about my surgery that I would have to go back on the waiting list, the second saying that my operation has been cancelled because there are now two other emergency cases that just have to be seen next Wednesday in my time slot. I mean, if you’re gonna tell lies, make sure they are consistent. 😡
I’m furious. I asked these questions 4 months ago and they have been ignored. Now I’m looking at another 6-12 months wait to get my surgery. I had a period this week that very nearly killed me I bled so much. And they say they are ‘sorry for the inconvenience of rescheduling’

Surely if it’s been cancelled then you are still the next in line to get a cancellation slot? Not wait all those months again

They couldn’t tell me anything. I was asking even for a time frame (weeks, months etc) so that I could at least tell work when I have rearranging everything to. But ‘we’ll let you know’. I think I have to have a slot with the surgeon in clinic (wait for that I’m guessing is probably 4-6 months) and then back on the waiting list. I’m so angry but it’s pointless. My anger isn’t going to change anything and I will have to go on for months more now, living with this mass that fills my abdominal cavity, squashes my organs, hurts my ribs and makes it hard to breathe.

I think there are penalties if they cancel and don’t reschedule in 28 days.

contact PALS and get them on the case.

by the way, I had cervix removed. The cuff isn’t as bad as it sounds and no more smears/cancer risk. I’m not sure how much structural work it will do being left.

Ah that’s interesting about the penalties. I will check that out.

It seems that the 28 day thing only applies if the operation is cancelled on the day. So my cancellation is 5 days in advance so they’ve got round that.

I just remember mine being cancelled and then I got the next cancellation (the next month) I would chase it up OP

@Disturbia81 I spent all day yesterday ringing the hospital, being fobbed off, contacted PALS and made a formal complaint. None of it has made the slightest bit of difference. I have to wait now for a clinic appointment (I’m guessing 4-6 months) and then wait again for surgery. I’m totally despondent today. I don’t know how I’m going to get through another year of period flooding, exhaustion, anaemia and carrying around my basketball sized uterus that’s causing me incontinence at every opportunity. I give up.

I would write to your MP with everything you have said here.

I would also consider going to the local press - this is shameful on behalf of the hospital.

This. You can also contact HealthWatch, highlight the issue to them (undoubtedly happening to others) and ask for help making a complaint.

Thing is, I’m too exhausted to start a letter writing campaign. I just want some treatment to fix my problems. The treatment I was promised. It doesn’t feel like I’m asking for the moon on a stick. And I really don’t want to start divulging personal details to everyone on my cc list about the parlous state of my reproductive organs.
Tbh I feel so low and despondent today that I feel like the only thing in my power is to completely opt out of the waiting list and just live with my problems.

There was an Ambassador for Women's Health and a Strategy for Women's health, but they seem to have fizzled out. ☹️

They’ll explain exactly what they are doing when you do the consent form.

Surgeon may not decide until during surgery. It also depends what you want, how old you are and any other risk factors. Don't cancel the surgery, you need the prolapse repaired which they will almost certainly be doing. It will be discussed prior to going to theatre. As you may know there are very long waiting lists for gynaecology so ne sure to turn up. Good luck but trust me, you will feel better for having the surgery.

@Funnyduck60 the hospital cancelled my surgery. I didn’t have a choice in it.

Today I’ve exhausted my options for getting help - hospital won’t talk to me, GP has suggested complaining to my MP and counselling (like the issue is in my head rather than that I need surgery and I can’t get a grown up to answer me on it). I’m waiting for the next option to be clinging to hope, homeopathy and incantations as viable alternatives to actually getting some medical help.
So - since it looks like I have to self medicate, what do people recommend? My main symptoms are crushing exhaustion, poor circulation (blue lips often), being freezing cold all the time, bruising easily, night terrors and a lack of desire to do anything (I think they call it anhedonia)

I really don't mean to be unsympathetic, I lived for years with the most dreadful gynae issues before my hysterectomy, so I know what's it's like. However, I will say that maybe you need to change your mindset a little. I know pain and suffering can cause significant distress, but maybe being a tad more accommodating, positive or understanding may help people meet you half way. Your posts are a bit angry and while I completely get how feeling lousy does that, maybe being a bit less angry might result in a more positive outcome on every level.

Are you seeing a physio who specialised in gynae? That might be useful while you wait.

@JockyWilsonsaid 🤣🤣🤣🤣🤣🤣🤣

Yep, I am angry. I’ve been waiting two years, I’m getting the run around from the hospital, I am quite mentally and physically poorly. It’s all avoidable and don’t think there is a middle ground to meet anyone at. What do you suggest? What’s the middle ground for the hospital not returning my calls, letters, emails? What’s meeting the GP halfway for the offer of the course of action to be ‘write to my MP’? How should I accommodate having my surgery indefinitely cancelled so that the hospital isn’t offended?
Ive waited, been patient, tried to be an informed ‘customer’, tried the alternative treatments to a hysterectomy, paid for private consultations. I’m fed up of being ‘positive and accommodating’. I need surgery and I should be told what will be happening and when. Please don’t patronise me with the ‘be kind’ approach.