Hi
So my 2nd LLETZ results came back today with CGIN with no clear margins at all. Same as last time. I have been told that I'll have to have a hysterectomy. Has anyone had one of these before? I know I haven't been diagnosed with cancer but I thought maybe some of you may have been through the surgery. Thanks.
Hi , I'm in the same position but I had a 3rd lletz . At my 6 month follow up I had abnormal cells again and had biopsies last week. Apparently the results are back (I called today) so if they show more cin/cgin I will have to have a hysterectomy . Have you been given a timescale ?
Hi.
No timescale, I was just told st my last LLETZ that if there were any abnormal cells that I would have to have a hysterectomy. There is a MDT meeting on 8th Sept, then I'll know more.
I have been doing a bit of research about hysterectomy (I'm the sort of person who has to know everything ...even the bad stuff ) so that I can prepare properly. I know two women who have had a hysterectomy but both for different reasons so it's difficult to assess how I would feel afterwards. I haven't yet discussed it in detail with my doctor but she has said that it would be done laparoscopically and that recovery is around 6 weeks. I guess once I get the results back I'll be having a more in depth discussion!
My main concern is how to look after the kids, 4 and 6. My husband will have to take time off I guess as the kids need driving to school (we live too far to walk ).
Is there anyone in the family or a close friend who could help with the children? the one thing my doctor did say was that I wouldn't be able to drive for around 4 weeks.
4 weeks! Ugh! I have friends but my family live in the south of e gland and I'm in the north. My husband will help as much as he can. It may sound dumb but a hysterectomy is removal of the uterus, and cervix I'm presuming (is cervix classed as part of the uterus/womb?) Has your doctor told you what they are taking out?
A hysterectomy can be either just the uterus , the uterus and the cervix or the uterus , cervix and the top part of the vagina. It all depends on your circumstances. For what I have (which sounds the same as you) it's the uterus and cervix. I was also told that it usually just involves an overnight stay in hospital and that for the first few weeks while you are encouraged to move about - there is a total ban on lifting anything heavier than a kettle . And absolutely no house work - at least that's one good point :-) .
Hi ladies, I had a hysterectomy for stage 1a2 cc just under 5 weeks ago and you wouldn't even realise, was in hospital for 2 days. I've got 4 children so had to be home ASAP. My hubby couldn't take time off work so the first few days were tough but after about a week and a half we were out shopping (hubby was driving) and I was able to walk round the shops etc, i drove after 2 weeks as I had no pain and could comfortably drive, we went away for the weekend after 2 1/2 weeks and I walked around 4/5 miles, and Ive started back at the gym also.
i know we are all different and heal differently but thought I'd share my experience.
I'm 33 fit and healthy, I lost over 2 stone at the beginning of the year which probably helped recovery.
good luck with everything and hope all goes well.
debbie xx
That's very reassuring Debbie, thank you for sharing.
Hi Debbie, thanks for sharing your experience. It sounds as if you've had a fantastic recovery. I take your point about being fit and healthy though. I'm on a bit of watch and wait at the moment as the new changes are low grade so the decision on hysterectomy isnt immediate . I'm going to use the time to get fitter so that hopefully I have a good recovery too. X
Hi there, I had a hysterectomy in March of this year for pre- cancer (AIS and CIN3). Basically, I had had a colposcopy which is when they found the Ais (up to that point it was only the CIN they had found). i had a cone biopsy which came back with no cancer and one clear margin (one undeterminablE). After much research and given where I was with having kids (41 and done having children) I opted for the hyster. Was the best thing I could have done. Removed cervix, tubes And uterus. Was down laparoscopically and I was able to move around and get on with things pretty quickly (ten days). I also don't have to worry about birth control now or any of that. Had my first vault smear and all came back negative for hpv which is good. Hope that helps and happy to answer any questions :)
Hi Sarah,
Thanks for your reply. When you say they took your tubes, do you mean your fallopian tubes? Sorry to be so ignorant about my own body but does that mean your ovaries were removed too or are they separate? Did you have any problems with your bladder as I've heard it can be affected. I'm glad you have got the all clear and have recovered well .
Hi there, don't worry I had no idea about any of this stifff until they started to talk about removing it lol! I only had one Fallopian tube as id had an ectopic which removed he first. As the tubes aren't connected to the ovaries (again something I didn't know) they now recommend taking the tubes and leaving the ovaries so you don't go through menopause but eliminate certain risks as they believe (not sure how validated this is) that some ovarian cancers start in the tubes so while they're in there thay sometimes take them. I have always had problems with weeing when I sneeze and that was after having the kids so incontinence hasn't been any more of an issue! hope that answers your questions And please feel free to ask any more!
Thank you, that helps a lot.
Hi Kirshan
I'm unsure whether I have CGIN or not....I have had treatment for CIN and HPV when I was about 20? And then was clear until about 3 years ago. Since then have been on the merry go round of smears and treatments. My last smear came back clear but with HPV - so went for another colposcopy and the consultant said they would take it to MDT meeting to see whether they would observe or need to treat again.
So I got a letter 3 weeks later to say in view that the problems could be higher up in the cervical canal they either wanted to treat again or offer me a hysterectomy. I'm 46 - definitely finished having any more children so when I had my appointment Tuesday just gone - I opted for the hysterectomy. I was fairly convinced to be honest that if I don't my hand will only be forced later on down the line - so best to bite the bullet and get it out of the way. Had a bit of a shock when they rang this morning to say they could do it next week though!!! However I'm just about to sign contracts to move houses tomorrow so I am now booked in for the 20th September......still much faster than I thought would be waiting.
Originally I planned to keep ovaries as did not want to be plunged into menapause - but they said if you are over 45 they prefer to take everything as if you were to develop ovarian cancer in the future it's one of those by way of if you have symptoms - then it's not usually a good outcome so she talked me into having it all removed. Will be keyhole.
Hope this helps. I didn't really dither too much as have also been having pretty horrible periods also for last few years and don't have many contraceptive options now as the last 2 coils I've had removed have borne infection.
If you've any questions to ask post op - please do get in touch.
Jane
Hi Jane.
Thank you for your comment. Sorry you are going through this too. I feel the same in that I think that if I don't have the hysterectomy now, I'll have to do it eventually anyway. Let us know how it goes!
I'm just coming up to 12 weeks post hysterectomy, I had my uterus, cervix, 3 cms of my vagina, fallopian tubes and ovaries removed, plus dissection of four lymph nodes all via five tiny little incisions.
I had fairly lengthy surgery due to scar tissue from two c sections, and the lymph nodes, I spent two nights in hospital, I was off all pain relief by day five and returned to work after 28 days. I felt I could drive after 3 weeks, but my insurance company said I needed to be 6 weeks. I had a very small amount of bleeding from week 4 to 6. I've had no external bruising at all from the surgery. My scars are amazing, healed very quickly and are fading fast. I've had no problems with my bladder or bowel. I'm not taking HRT at this time as I'm have chemotherapy.
I had to self inject blood thinners for 28 days, I also took the medication for constipation that the consultant prescribed.
Sex, I've not tried yet, mainly due to chemotherapy plus I've not had my follow up with my surgeon.
Top tip, I found a feather pillow really helped both at night and in the car, I could mould it around my tender tummy and supported me both under the seat belt and when I wanted to lay on my side.
Hi wedgegirl.
Thanks for your reply. I'm glad your surgery went well, I think mine will be lengthy too as I have a lot of scar tissue from 2 c sections. It's good to hear positive stories. I hope the rest of your treatment goes well.
Hi everyone,
im new to the forum after a friend suggested here for some info and suppor. I found this thread and it’s given me some info, thank you Ladies
Yesterday I had an appointment at colposcopy and the consultant blew me away a little. im having a mini meltdown. I’ve had two LLETZ recently - Dec and Feb results back and a group of pathologists / consultants looked and yesterday the consultant has given me two options -
We can do the LLETZ again or a hysterectomy taking my uterus and cervix. I think I understood the more they do the treatment the harder it is
the letter I received was an appointment and also stating no further treatment needed so I genuinely thought I was going to be told about smear tests regularly for a couple years. it wasnt what I expected at all. I feel a little shock and awe I’m 33 I have two kids - both teenagers no plans for more however the thought of a hysterectomy has given me the fear - the op, the pain (I’m not very good with that ) and the recovery
sorry to ramble on - emotions just getting the better of me
