Hysterectomy advice - more surgery!

[AGodinRuins]

A few years ago I had emergency surgery to remove a polyp the size of a watermelon and my ovaries were removed with it. This was urgent as it was crushing my bowel and I now have a vertical scar running from my belly button to my pubic bone.

Moving on to today and unbelievably it appears I'm in the same boat all over again. This time a large fibroid in my uterus which is partially blocking my bowel and causing all kinds of issues.

NHS Gynae team haven't been great. They 'forgot' to put me on the MRI waiting list in early Nov. They say I need a hysterectomy but wont put me forward for one until that's done. Meanwhile, I'm in constant low level pain, rushing to the toilet every couple of hours but unable to pass proper stools. It's completely affected my life. I cant go anywhere or exercise for fear of losing control in public. And I'm scared I'll end up being rushed to A&E again.

The wait for an urgent MRI scan is several months so I'm finding the money to go private for that. My partner arranged for me to have a private consultation which is happening this week. I'm not sure what to ask? The hysterectomy sounds inevitable, will they open the same wound up again? Will that compromise my healing? I don't understand why it wasn't all taken out before as I'm in my 50s. And honestly, I'm still a bit traumatised by that experience: the sudden illness, being rushed to hospital in an ambulance, the week long wait on the ward whilst in intense pain. Some of the staff were lovely then but there were others who took their frustrations out on the patients, particularly amongst the night staff. The thought of repeating the experience horrifies me. How long would I need to stay in, if it's a planed surgery rather than emergency one? Will the MRI show my bowel too? I have Crohn's Disease too but NHS gynae team don't seem interested in talking to my gastro doc. He's in a different NHS hospital (in the same city) and, according to my GP, communication between hospitals is difficult.

Anyone been through something similar?

I had to have surgery to remove a cyst 10cm x 6cm on my left ovary. I paid for an MRI to hurry things up. They operated and removed the tumour, and gave me a full hysterectomy including omentum. Two weeks later it was confirmed as a rare ovarian cancer. That was ten years ago.

I was in hospital for three nights. You can speed up your discharge by drinking plenty of water and walking up and down the ward.

I’ve subsequently had further surgery to repair my pelvic floor. The previous surgery left me with a leaking bladder. I paid privately for this as the NHS waiting list was two years. It cost £12,000.

Thanks for replying. I'm sorry to hear you needed additional surgery. Did they go through the previous cut? I'm anxious about that.

Re: post surgery. I remember being discharged on the Monday, three days after surgery. They had you up and showered and walking around the next day. Mind you, I'd had a week of laxatives and a blocked bowel to offload and had to travel to the far end of the ward to find a working toilet - so I was up more than I wasn't.

No, they did my repair vaginally.

Its possible they may be able to remove the fibroid laparoscipally, vaginally, or do an embolization to cut off blood supply. I had 9 fibroids ranging in size from 3-9 cms and they were effectively treated with an embolization. I would have done anything to avoid a full vertical incision which was what was suggested in order to carry out a hysterectomy to take them all out. Also removing your uterus puts you at increased risk of a prolapse, and as the daughter of a mum with severe prolapse issues, I wasn't going there either. I am probably not helping but wanted to add my own experience.

It seems as if they are confident that your fibroid is not a cancer issue ? If they were unsure surely you would be on the two week pathway? I had a full hysterectomy because of a fibroid and they wanted it out in one piece to test. Because of your daily trials I would suggest you contact whoever is in charge of your case again and say exactly what impact this is having on you.