Apologies in advance if this post sounds like a ‘Too Much Information’ sort of a topic, but if it saves anyone from going through the situation outlined below, I hope it is acceptable…
When I was preparing for my first Stem Cell Transplant in 2013, I was asked many questions by the hospital team about potential body piercings, tattoos, false hips and the like but no one ever asked me if I had a Mirena (contraceptive) coil in place. During the transplant, my temperature spiked (not unusual in itself) but stayed stubbornly and dangerously high. Amidst the upset of this, a female doctor asked me many, many questions and then got quite angry when she discovered I had a Mirena coil. She said it was extremely dangerous that I had attended hospital for a transplant with the coil in place as it is a foreign body that isn’t good to have inside when you are neutropenic (I think that’s what she explained - I wasn’t terribly well at the time). Anyway, this doctor decided I should have the coil removed there and then, which caused me a great deal of blood loss at a time of low platelets and low haemoglobin BUT my temperature broke very soon after that and started to go back to normal, so she may have saved my life, for which I am extremely grateful.
The moral of this story, is that if you yourself (female patients) or your female partner (if you are a carer) have a Mirena Coil in place at the time of discussing a Stem Cell Transplant, maybe consider asking your team if you/they should have it removed prior to going into hospital?
I would also be really interested to know if anyone has been asked this question prior to being admitted for a Stem cell transplant by their medical team as things may have changed a lot since 2013.
Im always asked if I could be pregnant and never asked if I have a coil fitted
I have had two stem cell transplants 2017/ 2022
Thanks so, so much for your post @Coastgirl I, personally, have never been asked about a coil before or any gynae issues (like wanting to have more children, being pregnant, menopause, still having sxx, being on the pill etc) when they should have been asked about for several other medical conditions and treatments that I have had.
Thank goodness for that female doctor in your case, thanks again and really look after yourself.
Thank you so much for sharing this and for starting a conversation of sexual health & fertility, which can often in many respects be overlooked when someone’s going through cancer treatment in it’s many forms.
I am so pleased that in your case the route of infection was caught and indeed you recovered relatively quickly.
Removing an intrauterine device (IUD) prior to transplant is something the clinical team may consider & we would encourage anyone in preparation of a stem cell transplant to raise this with their own transplant team to talk it through.
I hope you are still keeping well and always know that should you have anything you wish to talk through our support service team is always on hand- Blood cancer information and support by phone and email | Blood Cancer UK.
Take Care, Lauran
Not too much information at all - it’s an interesting and important issue you’ve raised. And I’m so sorry you had such a nasty time of it, regarding this.
Like you, I was asked many questions, and that included the coil question (a couple of times.) I remember the ward round group of drs and students and nurses discussing whether it would be safer to take it out, and potentially put me at risk of infection and blood loss, or to leave it in. They eventually decided upon the latter, and fortunately I had no trouble with it. Well, I THINK I had no trouble with it, but I had two infections (turning into sepsis) the source of which couldn’t be traced. So who knows? Perhaps it was that. But whatever caused it, endless bags of IV antibiotics eventually treated it.
Because the coil was out of date by the time I’d had my Stem cell transplant, I had it removed and replaced (with my consultant’s approval) about 10 months after my Stem cell transplant, and all went ok.
Another issue I had along this line was that I was also overdue a smear test after my Stem cell transplant. I checked that it was ok to attend, and had this done 8 months after my Stem cell transplant. But rather scarily and unexpectedly, the results came back indicating cell changes! You can imagine what went through my mind…
I had a colposcopy, and further samples taken, and that consultant eventually said the changes to my cells were superficial and very likely a temporary phenomenon caused by the chemo. I’m meant to be having another check up soon, just to triple check all is well. But that’s another thing for women to keep in mind - a smear test may show cell changes quite a while after chemo - so don’t necessarily panic.
Oh the indignities of a Stem cell transplant, huh? But all worth it of course, to be alive.
Hope you’re continuing to be well, @Coastgirl. Thanks for raising this - it’s not something we’re brave enough to talk about on here, usually. X
Thank you for your reply. I’m sorry you had sepsis and all those antibiotics for an unknown cause or (??) the coil. It’s encouraging that you had a pre-transplant discussion about it, so at least, for some women now perhaps this issue is being considered before the transplant and not at the worst moment!
Oh dear what a shock when you came to have your smear test. I had a big delay before mine, due to the pandemic, and when eventually it was done it was fine. That’s a helpful warning that the chemo could cause temporary changes in s smear test, though. I do hope all will be well for you when it is double-checked.
Yes indeed, SCTs bring about many indignities but much gratitude too, as you say. x