I’m awaiting a hysterectomy and have been since November. Unfortunately an administrative error resulted in me being removed from the waiting list and removed from the 6 monthly test of cure list. It was meant to happen by February.
I have seen some people talk about having a hysterectomy and then having check ups afterwards. I am hoping someone may be able to explain what the check ups afterwards involve please?
I had stage 1a1, Jan 21, margins not clear so another lletz in April 21, test of cure Nov 21. After chasing up, I now have another colposcopy booked for 31st August 22.
I had a radical abdominal hysterectomy in January for stage 1B1…all successful and given the all clear a week afterwards.
I had a post op about 8 weeks after the surgery and then a follow up at the 5-6 month mark (they kept moving my appointment until I raised the multiple cancellations with my Macmillan nurse).
At both I had a brief internal examination and a general chat about how I was doing. At the last follow up they found a couple of polyps which they biopsied and thankfully found to be just granulation tissue.
I was told I’d have follow ups every 3 months in the first year, every 4 months in the second and then gradually (assuming all continued to be well) they’d reduce the frequency until I was discharged.
I asked whether I’d have any routine testing for things like HPV and was told no, but they do physical examinations so they can check if everything all looks ‘normal’.
Thank you so much for such a detailed response. I really hadn’t imagined we would be checked so frequently. I think part of me wished that if we had the hysterectomy it meant we would never have to be checked again. It causes me so much anxiety in the run up to the appointment and then waiting for the results, and doesn’t help that each time… From appointment being booked, to test is usually around two weeks, then results usually around 10 weeks. It’s a long wait. Xx
I’m sorry you’ve had to do so much waiting. It’s understandable to feel anxious - the waiting always seems to be one of the toughest parts.
Different NHS Trusts might have different plans so definitely talk to your consultant and Macmillan nurses about what to expect from them. No question is a stupid one.
The checking isn’t just for cancer though. Depending on the type of hysterectomy and how they do it they’ll also want to check and make sure you’re doing ok physically and things are working as they should.
I was lucky and it’s been plain sailing. All I’ve been left with is a pooch of fat that’s a bit more obvious and the area still feels bruised due to the nerve damage. I just don’t wear jeans anymore.
I’m now 2.5wks post-hysterectomy (laparoscopic, robot-assisted) that I had fairly promptly following 2 LLETZ procedures (all within 6 months of detecting the cervical changes). I’ve been told that the guidelines are changing on follow ups but I will have to have vault smears for a while. If ongoing HPV+ve, they’ll stay frequent. If -ve, after 2 consecutive clear smears, I’ll return to the normal 3 yearly testing.
