Hi ladies, I am currently waiting to go for a colposcopy biopsy and lletz treatment on the 2nd of may for cin 3 (my hospital automatically treat with lletz for cin 3 before biopsy results!) Following my 6 month check after having treatment in September (again for cin 3) . I have a few questions 1.can I ask for a hysterectomy ? (I have four children and don't want any more) it may sound extreme I know but an option I would consider 2. What support/treatment do consultants offer for recurring cin 3 in such a short time period? 3. Is it normal for cin 3 to come back so quickly? Any advice and information would be great. I understand their are lots of ladies going through much worse but I feel that this is consuming my life it's always at the back of my mind! Thanks in advance
Hello,
I was offered a hysterectomy after Lletz and two cone biopsies as I have persistent CIN 3 and hpv.
A hysterectomy is a fairly major operation and took me a good 6 months before things felt ok again. I've also had a few ongoing issues so it doesn't necessarily guarantee you won't have any further treatment.
Part of me is glad I had the other treatments first as it gave me a chance to get my head round it all, the other part of me wishes I had it sooner as every operation comes with its own worries and stress. But you can never know how it might turn out.
I'd recommend giving this treatment a go first and then wait to see how it all is in 6 months, hopefully you can avoid any further treatment.
Hopefully some other ladies can add their thoughts as it's a completely personal choice. Maybe speak to your consultant to so they can give you more information on potential options.
Hope that helps.
Hi, thanks for your reply and advice. Seems like you've been having a rough time With all the things that have been going off.
I don't know how to do the tag at the bottom but basically I've had normal smears up until last august cin 3 and lletz returned to doctors for test of cure so I can only assume clear margins. Had some bleeding after sex in between so went to see gynae and they referred me bk to colp saw nurse she cauterised said it was all fine and to go for smear. noe it's back for lletz and colp again cin 3(I had a feeling results wouldn't be normal Not sure why)
tI thought a hysterectomy would solve the problems but as you've said it doesn't always ☹️ i thought it would be an option as I've finished my family.
i just don't know what to think at the moment, I'm definitely going to go with more questions this time as I have a better understanding of what's happening this time.
It just seems to take over, it's constantly at the back of my mind! Oh go I sound so dramatic sorry, I know there are people in much worse situations! I think it's the not knowing and waiting without having the facts or information to hand.
Hope your getting on ok
xxx
Hey, don't feel bad about feeling worried, that's pretty normal. It's pretty difficult not to when you're not quite sure what's coming next. I think I've gone full swing from being terrified, mildly worried, optimistic and worried again (repeat). I know CIN doesn't mean cancer so that's a positive thing but I get why you just want the hysteresctomy to get anything bad cells out.
Definitely ask all the questions so at least it's an informed decision that is right for you. For me it was a pretty straight forward decision because of all the treatments so far, being high risk, my age and not needing to have children. I also had a good friend I trust to help do some research on the pros and cons of a hysterectomy and whether to keep my ovaries or not. Plus my partner is super supportive so that has definitely helped.
I'm still hopeful though and at least I know I'm in the system and being looked out for. Fingers crossed my body kicks back this time!
Oh and just because I've been pretty unlucky don't think you'll go down the same route, every situation is soooo different.
Good luck xx
Hoping to hear how you are faring, kontikitoo. I'm 63. Two LEEPs (so called in USA), they want to do a hysterectomy and won't really listen to me when I ask for alternatives, and when I tell them a hysterectomy will not cure the disease. I mention the possibility of VIN and they snear at me
I'm sincerely hoping it has not come to that for you, for your sake certainly, but also ... I don't know. Reassurance that this really is "rare" like they say
It would be a shame to have this major surgery, with its potential complications, and then have to deal with more.
I so hope you are well.
HPV positive 2015
Colposcopy, LEEP August 2016, CIN 1, 2, 3
Biopsy, positive margins ectocervix, endo and ECC Clear
March 2017, second LEEP
Biopsy positive focal lesion, CIN 3, ectocervix
Have 1 cm left of cervix, doctor says hysterectomy, seeking second opinion. Old lady, they don't care that I don't want to be cut up any more...
Hi Katrina,
I completely get you don't want any more operations and sometimes I wonder 'what if' I didn't have it done, would it have cleared on its own?
I guess I made my decision based on the potential risk for me be higher than leaving it, and at the time the idea of getting it all cut out seemed like it might just resolve everything as I was unaware of things like VIN. After the hysterectomy I certainly felt a sense of relief and hoped that might be it. Having that hope certainly helped focus my mind on getting better.
The hysterectomy was more or less ok with some granulation a year later preventing me from healing. I'm still having to wear small sanitary pads everyday as I produce more discharge than I used to, so that is a pain. I'm also having the occasional bit of blood, usually monthly so in line with some ovary pain. So I'm going to ask my consultant about that. Turns out other women have these mini bleeds and it can happen if some tissue still remains But definitely something weird going on!
Overall it seems better, I can have comfortable sex again and I'm excercising without worrying about embarrassing leaks..hurrah!
Im still worried about the VIN as my next tests this month should reveal if it is persistent or not, plus ive been booked in with two specialists including the top oncology specialist at my local hospital, that's slightly worrying too as until my last appointment I'd never met him before.
As with all of this , it seems to be a step by step process doing the minimum amount of surgery each time at a point it's absolutely necessary.
For me based on my personal situation and the high level of risk, I would probably still have a hysterectomy. This is also based on the fact my symptoms all accelerated so fast from the original diagnosis.
I guess I was told in 2013 I might have to have a hysterectomy so I'd had a few years to process that information. Sometimes I also wonder what the outcome might be if I had just the one op back then rather than lots of small ones.
Definitely take the time to make a devision that's right for you, it's such a personal choice. Maybe ask what the risk are for leaving it for 6 months to give you time to reassess?
Good luck with your decision x
kontititoo, thank you so much for responding so quickly to my post. I very much appreciate it. In my case, I do not know how "fast" anything progressed, as I was diagnosed with HPV and abnormal pap in April 2015, told to check back in a year, and behold, CIN 1, 11, and 111. After treatment, the CIN was cleared in my endocervix (never any discovered in the canal), and I'm dealing with the CIN 111 in the ecto. Sitting right there, on top of the vagina, just chilling. Or whatever. I've read so much about "persistent/recurrent CIN 111 in 'elderly' (UGH! but I guess call it like it is) women", and it doesn't sound good. I'm thinking of you, kontikitoo, and hoping for the best for you.
