A question for post treatment ladies

Hi

I have a mirena coil. My oncologist advised me to get it removed prior to treatment saying it could be ‘tricky’ to remove it afterwards. However, when I went to have it removed my GP couldn’t find the strings and said I’d have to have it removed surgically! whatever that means. There wasn’t enough time so it stayed in. 

I’m now 13 months post treatment and have the added complication of vaginal stenosis. So the thought of anyone going in there fills me with dread. 

I’ve discussed this with my GP recently after finding out I’d started the menopause. The coil has now ran out of hormone so he advised I get it removed in case of infection. I explained my concern about the stenosis but he offered no advise or reassurance. 

So I’m going to leave it for now, in the grander scale of things it’s not important. I have my smear in April which will be a worry in itself so I’m going to see how that goes. If it’s not too uncomfortable I’ll look into getting the coil removed. It’s been in there for years a bit longer won’t matter.

So I would advise that if you have enough time, get it removed as it’ll be one less thing to worry about. However, if you don’t have enough time, don’t stress and deal with it at a later date. You have far more important things to be focusing on right now. In addition, you may not experience vaginal stenosis to the extent I have.

You could always email our online anal cancer surgeon to gain his view. 

Hope this helps.

Sx

Hi ,

 I too have a mirena coil & queried with my oncologist if it should be removed prior to my treatment & he said no it’d be fine where it is. I just assumed with having pelvic radiotherapy it would need to be removed beforehand! 

I’ve since spoken to the Dr that put my coil in & she has said it’s due to be removed next year, she said if it can’t be removed the usual way or I’m overly concerned about the procedure then I can have it removed under sedation or a general anaesthetic. I’ve also been told the same regarding future smears, try the usual method first but if it’s too difficult then I can be sedated.

Nicola   

Hi ladies

i was told my coil had to be removed pre treatment.  I too have vaginal stenosis and have never resumed my love life 2  on sadly.  My oncologist told me not to have smear tests either as pelvic radiation gives false results.  We are all told different things.  I am now waiting a referral to a psychosexual counsellor as my lack of love life has impacted terribly for me.

i would hasten to add I use those awful dilators 3/4 x per week

good luck ladies 

Cathy 

Hi Chatty cathy,

I’m sorry you’re still having issues so far down the line, I’m very happily single but I’d never say never so I too have done as I was told with the dilators! I also have a coil but was told it could stay in situ throughout treatment although it’s due for removal next year. As we all know many hospitals have different protocols regarding treatment etc., but I wonder also if it depends on the type of coil fitted? Mine is a mirena coil & therefore contains no metal so was told by my oncologist that the treatment wouldn’t affect it or vice versa. I’m not looking forward to the removal but was told if there’s too much discomfort the regular way either sedation or a GA is an option. I will ask my oncologist at my next appointment (October I think) about the smear tests as I’ve never been given the information that you have. 

I really hope that you find the counselling helpful & you’re not waiting too long to begin. 

Nicola

Hi Chatty cathy

I sympathise about the stenosis as I to am living with this and its impact.

I’m going to directly mail you. I’ve found lots of groups via social media as well as a fantastic American womens anal cancer Facebook page and have been getting lots advice that I’ll share with you. 

The important thing is don’t give up, persevere!

Sx

Thank you so very much.  

Ive not received your message yet though? 

Thanks

cathy 

Sorry Cathy I’ll message you tonight. My 3 kids are all off school so my time is not my own at the mo! X

No worries I remember those days!  

Thank you x

I would appreciate the info too

Many thanks

Susie 

I will send info to you also.

No magic wand I’m afraid just advise/tips I’ve found along the way that you may find useful. 

Sx