Hi ladies, I hope you are all as well as can be expected in these circumstances. I'm looking for a bit of advice please. Has anyone here had a hysterectomy as a preventative measure I.e to prevent pre malignant change rather than a cancer diagnosis where there was no choice? The reason I ask is that after having very very early stage 1a 2 years ago my recent smear has shown severe changes and as there was nothing to see of concern during the colposcopy, they are discussing me at a MDT meeting tomorrow. When I last spoke to them on the phone they asked if my family was complete and said that as I've already had 2 LLETZ that a vaginal hysterectomy may be an option for me. Obviously I am keen to avoid major surgery if I can but then on the other hand it would stop all this constant worry and fear and having to plan my future holidays etc around the time I have checkups etc. I honestly thought that after the LLETZ 2 years ago that that would be it for me so I'm shocked and extremely worried to find myself in this situation again and my biggest fear is that this keeps reoccuring. Has anyone else had this happen to theM? I know when they phone me after the meeting tomorrow that they will ask again if my family is complete and that the option of a hysterectomy may well become very real. I am lucky to have a family and am pretty certin my family is complete but at 34 years old I'm not sure I'm ready to make such a permanent decision.
I am in a similar position. I had a vaginal hysterectomy last Thursday as a preventative measure.
I'm 38 with no children (conscious decision not to have any) and was diagnosed with CIN and HPV whilst at University in the mid 90s. This was removed by a loop procedure and no further problems but back in February I was diagnosed with high grade CGIN on a routine smear. I then had x2 loop procedures to remove the CGIN. I did some research and asked my Consultant whether she would perform a hysterectomy as a preventative measure which she was happy to do. I also asked the expert on the website and they also felt this was appropriate as CGIN can have a habit of recurring.
I was expecting a full abdominal hysterectomy as I haven't had children but luckily with a bit of team effort (I didn't ask!) I was able to have a vag hyst. So far so good, I was admitted for surgery on Thursday and was home with minimal discomfort on Friday morning. The worst bit has been some constipation but a couple of laxatives have sorted that! I am now more or less pain free with some very mild "period type" pains, if anything its difficult not to forget and carry on as normal.
I'm back in the colposcopy clinic in 6 months for a vault smear and then hopefully that will be it. I am awaiting the histology results from what was sent to the laboratory.
I know everyone is different but for me this was definitely the right decision. I really didn't want the worry and follow up regime and following the x2 loops I don't think there was much cervix left anyway. I have been hugely pleasantly surprised as I was expecting to feel really rough for a while.
Im in the exact position as you, I too have been offered a hysterectomy, I was diagnosed with stage 1A1 and CGIN over 2 months ago, after 2 LLETZ treatments I am clear :) :) all the while I was waiting for results and things I was definitely sure I was going to have a hysterectomy, I have a 6 year old Son and hes my world, before him I had two miscarriages and thought I would never have children but eventually I have my little Ronnie :)
I am also 34 and now I have had the clear results its made me wonder if I really want a hysterecomy :/ me and my husband were not going to try for any more children as we were pretty much scared of going through the miscarriage side again, but at least at the moment I have the choice so to speak! If I had the operation then the choice is gone forever!!
Im so confused and I know exactly what your going through, do I have it done so I dont need this horrible worry again?? Then theres the fear what if I dont have it done and cc comes back more aggressive!! I just dont know what to do, its a tough one
Hi ladies, thanks so much for replying to me. It's good to hear that your surgery went well bek and that it wasnt as bad as you thought. That certainly makes me feel better about the recovery if I do go ahead. How long have you planned to have off work etc? I've done the google thing to see what the recovery times are. I had a c section with my 2nd child so I haven idea of some of the problems after. I suffered really badly with trapped wind after my section so I will certainly stock up on peppermint oil capsules as I found these a god send!
i had a phone call yesterday from the hospital and they have confirmed that further treatment is needed, starting with another loop and that they would look to do the hysterectomy after this. When she said this I properly freaked out and explained that I wasnt 100% sure anymore (last time we spoke I had said my family was complete). What we've decided to do is wait until after the loop and see what the biopsy results come back with. It might be that there are no cells there and that we could leave it for another 6 months or there might be cells remaining in which case I would have no choice about the hysterectomy as they couldn't do another loop as I would of had 3. I have said I will have a think before my appointment (which has been delayed as I am on holiday). I know my family is complete but I'm struggling with how permanent this will be but like you Jodie I am also terrified that this will keep coming back and I will kick myself for not having it sorted when I had the chance. My last smear a year ago was negative so in the space of just 12 months I have developed high grade cells, not mild or moderate. When I think of it like that then it's a no brainer really but I need to keep my emotions out of it. It's very hard isn't it?!
Thanks again ladies, its nice to hear from someone who knows what I'm going through. I hope you are resting bek, I know it's easy to carry on as normal but I made this mistake after my section and suffered a few days later so make sure you take it easy!! :-) x x
Yes results came back all negative, I was very relieved. In terms of recovery I have been very lucky. I was able to continue without any pain relief and was able to drive after 3 weeks which was great. I guess this is all due to having a vag hyst rather than abdominal. I am between jobs at the moment but if not would have been ok to return after 4-6 weeks.....you really wouldn't know I'd had anything done. Had a little bit of an emotional wobble at around 6-7 weeks, although I've chosen not to have kids the finality of it hit me a little a boo hoo helped! So now back to normal, bleeding has stopped, relations resumed and I've joined the gym!
But now my overwhelming feeling is of relief, particularly when I read some of the heart wrenching messages on this site. I am very grateful I was in a position to make a positive decision tp prevent cervical cancer.
Hope all well with you, let me know how you're getting on....
sorry i've only just seen this reply. I've had my MRI today which I found quite traumatic as although I have a fear about tunnels, I wasn't fully aware of how big this phobia was!!! Probably as I've never been in the situation before. Luckily the staff were fab and managed to get me in the machine legs first. Bless them, I did feel like I was being a total pain but they were great! So now I'm fretting a bit about what they will find (if anything). I'm nervous about the operation but mainly because i have children so I'm worried about the recovery as I know what I'm like at 'resting' and my children are too young to understand that they need to leave me alone to recover for a bit. Your story does make me feel better though so thank you for sharing. I had a c section so I know how that was so I'm hoping that the fact it's keyhole will make it easier.
I'm pleased your results are good, I have a few personal questions so will PM you if that's ok? Thanks x x
