Hi everyone,
What a great forum this is, and I have finally built up the courage to post myself.
I have been dragging my heels over signing up for a hysterectomy, and I was wondering if anyone had been in a similar position.
I do not have cancer, lucky I know, but persistent high grade changes.
Over the last 3.5 years I have had 3 LETTZ and a cone biopsy, and every follow up smear has shown CIN3 changes. I am 37 and have no children, also my partner has just left (great timing!) so I am not currently in a position to try for a pregnancy(if i were even able given past interventions).
As you can imagine there is little cervix left, and MRI scans show the scar tissue has left little room between my remaining cervix and my bowel and bladder. As a result the specialists have ruled out a trachelectomy.
The only surgical option is a hysterectomy.
My reluctance comes from holding on to some possibly very unrealistic idea of having a child, and it being pre cancer, not cancer. And fear of the op.
On the other hand I could be being so foolish in delaying an operation which I have been lucky to have offered to me, and could be risking my own health in delaying.
Has anyone been in a similar position with their own thoughts and experiences to share? Or just any thoughts at all?
I realise it is all a very personal decision, and a sensitive subject, but would so appreciate connecting with women that may understand my predicament.
Thank you in advance,
Much love,
Kath x
Hi Kath,
I am new here too, this is only my second post
I am in a similar position to you healthwise, and have my hystectomy booked soon after years of abnormal smears and 3 Lletz treatments, very similar really
I am 42 years old btw. The way I see it is, really it is a gamble. You could leave it and things be fine, or you could leave it and your descision comes back to bite you on the butt big time , in the future.
I wasnt planning any more kids, I have one son now adult so the kids thing wasnt a consideration for me.
What you seem to be considering is putting the operation off ''indefinatley'' until you meet someone and have a child. This could take a long time..years..in which you would be risking your health on a situation that may not even happen.
I cannot pretend I am not scared of the operation, I am very nervous to be honest, and my biggest choice or worry at the minute is trying to decide whether to keep my ovaries as my consultant has given me the option, which i was not expecting and god knows how i am going to make that choice 7
These are only my thoughts though Kath xx
Thank you so much for your response. it helps so much to know there are other women out there in a similar situation- especially as I hadnt met anyone yet who has had hysterectomy due to 'only' CIN.
You are quite right about the long indefinite period of waiting, and it feels like waiting is just being foolish when I have the option of staying safer by having a hysterectomy. It is really just the grief of not being able to have children that I woudl have to cope with, but that I assume will also somehow be manageable.
My decision is made, hysterectomy is safest, now I just have to set the weheels in motion. In a bizarre twist of fate, I was meant to have my sppointment to discuss the op at the end of February-when the whole city was snowed in. Appt was cancelled and due to overcrowding has been rescheduled for late April. The waiting has been utterly excrutiating, and I feel like a nervous wreck behind the scenes!! But am seeing it as a positive-that is what would happen if i opted to wait, and clearly for me thats not a realistic option-hysterectomy it is.
I'm not sure if they would reccommend taking my ovaries or not, so am not very clued up about your situation at all. It certainly isnt an easy decision to make on top of everything, and I fully understand being scared of the op- I am too.
Wishing you all the best with the decision and the operation.
Thank you again for responding, it means a lot to me,
Kath xx
Hi ladies,
I'm 50 and had a radical hysterectomy (laproscopic) on 21 Mar. In January, I was told I had abnormal pap and needed a cone biopsy. At that time, my gyno offered a preventative hysterectomy since I have had several treatments for displasia over the years.
After cone biopsy, I was diagnosed with IB1 cervical cancer, so it was no longer optional. However, I had already determined that I was going to pursue the hysterectomy to avoid future risks. I wish I had looked into the optional hysterectomy sooner.
Based on extensive research, I opted to try to keep my ovaries, since I don't have risk factors for ovarian or breast cancer. My surgeon ended up taking one because it was cystic.
The surgery isn't much to be feared. My greatest pain came from the gas used to inflate my abdomen during surgery. That caused pain in my shoulders for several days, but the drugs helped a lot. I was able to walk without assiastance within 2-3 days of surgery, although it was exhausting to do anything for about a week. I am down to taking pain med once a day and not even every day.
I wish you the best of results on whatever decision you make.
This forum really is great, such a support network of other ladies going through similar things. It is amazing
Have you had your appointment yet Kath?
Beth- that is so reassuring thank you for sharing your surgery story.
Less than two weeks to go now, but I feel a bit more chilled than I did before. I honestly feel lucky, and am looking forward (hopefully if i can make it) to a close friends Hen night four weeks after surgery - rather than the bits in between
Hugs xx
Thnk you both so much for your support.
Really reassuring to hear the op isnt too scary, thank you Beth.
Off to the docs on Monday for an examination to check how things are and go on the waiting list, should be between 2-9 weeks wait. Am hoping its a longer wait as I have holidays booked. What a silly thing to worry about when health is at stake!! And they are going to try do it via keyhole, but as I have a fair bit of scar tissue in there they'll have to see once their in whether they'll need to open me up or not.
SillySausage I see from the date you must have had your op? How did it go? I hope very much youre recovering well.
Love and best wishes xx
Hi Kath
Yes I am 19 days post op now.
The op was not half as bad as I thought it would be. I was up and about the next morning / in the shower, and released the afternoon after surgery
They managed to do a key hole surgery for me, and the wounds are tiny, five small ones that will barely be visable in a few months.
If i had any advice to give to someone coming up to this op I would say (bearing in mind these are only my bug bears, everyone seems to recovery differently
- Strengthen up those pelvic floor muscles now- before your op. (Right now I am a bit concerned about a bulgey feeling as in worried about prolapse, but I am assured it is still very early days and is likely to be swelling) - ask your doc what measures they take to avoid vault prolapse. To be fair , if i have got a prolapse, it is not the end of the world , it is treatable and better than the high risk of CC
- Keep in contact with other woman in ur situation. This forum is great but it can take a while to get an answer, they are far busier forums out there where you can speak up in the middle of the night and someone is there - pm me if you want details of the one I am on . I have learned more from other women on Forums than I have my doctors
Take care love and I hope things go well for you
