Thank you so much for replying, I really really appreciate it. I’m really pleased you’re doing so well and recovered quickly.
I know this sounds awful and it’s a very personal question that you don’t have to answer, but do you still feel womanly? I don’t know how best to ask it?
I don’t think it would stop me from getting it because there are things that are so much more important but I just have a worry that I wouldn’t feel very womanly afterwards and a bit of an empty shell? - again please don’t answer if this is too personal
I wont lie it has impacted on my sense of myslef, but I didnt have my overies removed so i am not on HRT. I booked in for a private pelvic physio about 3 weeks after, just for pelvic floor exercises and deep abdominal muscles exercises. I honestly feel phsically fine now, but i was concerned about putting on extra weight and i am trying to be a bit mindful of diet etc.
I have also recently had a laparoscopic hysterectomy- I had 1a1 cervical adenocarcinoma and multiple foci of CGIN. This was found after the first abnormal smear I have had (I am 42, all had been clear until this time).
My story is slightly different in that there was an adenocarcinoma, however it was so tiny. My smear came back with high grade severe dyskaryosis, then colposcopy and punch biopsies which were reported as likely early invasive adenocarcinoma. First LLETZ showed adenocarcinoma with a 1mm depth, and margins not clear, second LLETZ had CGIN but clear margins. I was offered the choice of conservative watch and wait, or simple hysterectomy. I have 2 teenage children and no desire for any more, so it was a relatively easy decision for me. I am so thankful that I did this, as my histology from the hysterectomy showed further CGIN in the remaining bit of cervix. glandular changes can have skip lesions, which occur in 15% as I understand- this is what I had. It’s like having lots of little islands of cell changes throughout the cervix. I also opted to have my ovaries removed as I felt that this also reduced the risk and I am of an age when I would be approaching menopause.
The surgery itself was hard in terms of recovery- I felt awful for the first 3 weeks (but was also in surgical menopause and adjusting to oestrogen patches/dose). Things improved fairly rapidly thereafter, and 7 weeks on I am now getting back to normal. Started running and weight training again (starting small and building up gradually). Still very easily tired but otherwise ok.
Thank you both, it’s so good to hear people’s experiences. I’ve had a good chat to my very straightforward friend today and I do feel much better. I know it’s the right decision I just need to process it and get prepared physically and mentally I think
Hi Lisa,
I’m sorry that you’ve had to come into this forum to find the help you’re seeking.
A hysterectomy for me was the right choice. I took a few days to think it over and my friends and family were supportive and all recommended it.
It is a hard road to take in the mental preparation for it. You read all the horror stories and yes, there are times you think about your ‘womaness’. I never wanted any more kids, but i still cried at the thought of that choice being taken away from me.
I’m 6 weeks post op now and returning to work in person next week. I worked from home after 2 weeks (I’m glad i organised this before as i was going stir crazy and that’s when the dark thoughts started to appear). Going back to work, even from home, made me feel useful again.
The results of my hysterectomy were similar to @Cozza in that they found island’s of further CIN around my cervix so even with another lletz, they would have struggled to find, locate and remove it.
Thank you so much, really good to hear you are doing well and returning to work after 6 weeks!
Thank you for sharing as that’s really informative. I have discussed the ‘human error’ / hidden cells aspect with my husband - you can’t miss something cancerous if the body part isn’t there for it to be cancerous on - if that makes sense!
I’ve really been flip flopping and having all the emotions, guilt of not giving my daughter a sibling, guilt that I’m even considering delaying anything to have another baby.
Like you all it’s the fact that the choice is taken away. I’m worried how I will feel and how people will view me if they know?! It’s ridiculous to say/type that!
I have a consultant appointment next week over the phone as I rang and asked to be put on the waiting list for a hysterectomy. I think I need to talk it through and then I’m sure the waiting list will give me time to come to terms with it.
The human error was exactly why i decided to have a hysterectomy. As my sister put it, cells like to have parties and some times you need to call the police on them.
Getting on the waiting list is a good idea. You can still back out all the way up to the day. The amount of times each different person in the hospital asked if i was still consenting to the operation made sure i had every opportunity to back out if i needed to.
@Nand5 how are you feeling?
I am completely exhausted! This fatigue is really weighing on me. I went back to work at week 7 post op and, by Friday, my brain isn’t working because I’m so tired. This is week 2 at work and I’ve had to sleep each afternoon upon returning home.
What is going on?
Are you experiencing anything after your operation?
I have experienced fatigue on and off. So i was back working from home after around 3.5 weeks, then a couple of days in the office around 5 weeks but i had to go back to working short days again, i had some time off over Easter. I am starting to be more energetic now but I do get very tired still, esp when i exercise. I can see its getting better slowly. Emotionally i am like a yoyo though! Lol. I am making a bit more effort to be sociable and see people, as with everything going on since xmas i have come quite isolated and lonely which doesnt help.
Hello,
I was told I had clean margins and they think they got it all but they still suggest complete hysterectomy, why? I was hoping to still have another child but I am older and chances are already slim. I’m afraid I’m praying for something that wont happen and maybe taking a big risk by not having the operation? I have a follow up in a couple weeks. I’m hoping they can calm my fears. Since my surgery I have also been diagnosed with thyroid cancer and had the right side removed along with a tumour attached. I suffered a paralyzed vocal cord (hopefully temporary) and then blood clots in both legs and multiple pulomary embolisms. After the pathology results they say they found some marker they dont like and want to remove the other side of my thyroid. Im beside myself.
I am so sorry this is happening to you. It a hard decision at the best of times, but when you want to have more children it is very difficult to work out what’s best. When is your consultation scheduled? Maybe make a list of questions before hand?
With me they advised hysterectomy because they did a lletz with clear margins, but 6 months afterwards it was back. They offered more surgeries but there was no guarantee that it wouldnt come back again, and i think with each lletz the cervix is smaller so the procedure is more difficult. When they tested the cervix aftervthe hysterectomy the gcin was quite extensive so i suspect there was some changes which remained after the lletz. I think with cgin the only cure is hysterectomy because itvis hard to detect and because of skip lesions which can be hidden despise successful lletz.
My surgery was August 29th and my check up is May 2nd. If I wasen’t so preoccupied with all that’s been happing since with the second diagnosis and surgery etc. I would have thought this recheck should have been so much sooner. I’m so scared.
So far the news is optomistic. They didn’t find anything more so they aren’t pushing for the hysterectomy. Im just worried about waiting 6 months to check again. I am going through so many other tests and have another thyroid surgery coming up too. I really needed the positive news but wish we were checking more often to have 1 less worry.
Hello ladies
Firstly id like to thank you all for sharing its been really helpful to read through.
Im 34 with 2 children (12yr and a 4 month old). Ive previously had CIN2 and had LLETZ treatment. Since then i had my youngest baby and at my smear i was told if it was clear i would be going back to the usual 3 year check ups but unfortunately i received the appointment letter for a 2nd colposcopy and biopsy.
I have this feeling in the pit of my stomach that it will be CIN2 or worse so i am reading up about hysterectomy. So im wondering what the chances are if this being a realistic option.
Prepare for the worst and hope for the best!
I am sorry you are going through this. Its such a worrying time with the anticipation and anxiety while you are in limbo. I think you just dont know what the options will be until you have a chance to speak to your drs. I think it is a good idea to use resources such as this site to read up on the various treatment options, so you are prepared. I wish i had done so earlier, i hope it gives you some comfort to know that if you opt for a hysterectomy that it wasnt too bad for us. Having said that… everyone is different, and attitudes towards risk and priorities are so individual, these things hit everyone differently. Try not to worry too much xxx
