Hormonal coil removal & terrified

Diagnosed with breast cancer Recently diagnosed with breast cancer
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Hi,

Firstly, sorry it’s a long post, and sorry if it’s TMI, I’m just so scared about this and really need some help :pleading_face:

I was diagnosed with invasive Ductal Carcinoma last month and am working my way through what feels like every type of scan and biopsy it’s possible to have to get a treatment plan.

The cancer is ER+ & PR+ so I stopped HRT and need to have my mirena coil out. When my GP surgery nurse tried the threads were missing so was referred urgently to gynae for a 3d ultrasound. Today I had a pelvis ultrasound to check it’s in the right place and it is. My uterus is retroverted so they couldn’t do 3d one so did a 2d one instead. It’s highly likely I have a recurrence of endometriosis.

When I had the coil fitted in December it was immensely painful, it reduced me to tears. It’s the 3rd coil I’ve had and it’s never ever been this awful. It was so painful that I’m now so anxious about having it removed I cried the whole way back from the scan today. I’m at the point of worrying about the pain (not the procedure itself, I know it has to come out, but the pain is terrifying me) that I’m starting to think that I’d rather leave it in & risk the cancer more than have it removed. I’m that scared.

I’ve had an ultrasound, 3 x mammograms, MRI, breast core biopsy, node core biopsy, tomorrow have a stereotactic biopsy and none of these have phased me one bit aside of the usual pre medical procedure nerves. The thought of having this coil out though has made me cry more than the cancer has. In fact my sleep is being disturbed by this and whilst I do think about the cancer it’s not to this extent.

I’m fine pain wise with smear tests but my last one a 2nd nurse had to help as they couldn’t actually find my cervix! The retroverted uterus has caused problems before. The pain is comparable or worse than the examination you have when in labour but that last seconds. This is going to be up to 10 minutes long and them going into my uterus with forceps

Has anyone else experienced this level of anxiety about a procedure and how did you manage it? Has anyone had a coil removal in hospital when threads are lost? Does anyone know what pain relief I can ask for? The thought of needle local anaesthetic on my cervix is horrendous.

I’ve had 2 children (C-section & natural deliveries), various surgeries, dental work, and never have I felt this terrified.

What can I do? I genuinely would at this point rather keep the coil and live with the risk of the cancer but I know that won’t be allowed :cry:

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You could ask your GP for pre procedure diazepam. You might have to argue hard for it - but it’s clear you need something on the day at least. I’ve had it before big dental stuff before and a friend had it before she had her coil removed in hospital too.

It works a treat - a complete absence of anxiety - you can see why it is addictive.

On the day, make sure you explain the extent of your concerns and if they offer gas and air or anything take it. I had a biopsy in uterus a few months back, with injection of local anaesthetic, I survived! Ask them to inform you at each step of procedure so that you can do deep breathing, have gas and air etc at the right times. - take any painkillers your gp advises before you go too

Sending love xx

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Definitely advocate for sedation of some kind at the hospital ? You shouldn’t have to be so worried about the pain , advocate for yourself - don’t give a stuff what anyone thinks - say you can only cope with the procedure if you have that in place .

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I had a mirena coil fitted after my first diagnosis of breast cancer but it was grade 1 so maybe that’s why they said it was ok. The amount of hormone it produces is minimal and confined to the uterus. I also have a severely backward facing uterus and I seem to remember being given Anaesthetic when it was fitted but maybe I just suffered- it was a long time ago in 2004

It greatly reduced my horribly heavy periods so it was a godsend as I didn’t go through the menopause until I was 54.

I went to the Marsden hospital in Chelsea to see a specialist there to discuss having it fitted. I am now 70 and still alive despite getting another breast cancer primary diagnosis in 2022 in the same breast.

I put this down to bad luck and it’s still not killed me. Heart disease will probably get me in the end, a cheery thought!

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I’ve spoken to my GP surgery and they have prescribed a single dose of diazepam. They’ve also recommended that I call the clinic before the appointment and explain how anxious I am and they may be able to give me extra time or ‘special measures’ in terms of the range of pain relief they can offer me.

Thank you all for your support. I have to say, despite this being my third coil, I am relieved that I won’t be having another one. Nothing is worth this level of anxiety.

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I’m pleased you now have diazepam to take before your procedure.

I have had 3 coils inserted and removed. I also had one removed after being diagnosed with breast cancer. It wasn’t comfortable and I wasn’t offered any pain relief, this was in 2023. I remember reading that guidelines had changed to include local anaesthetic around the cervix/ neck of the womb.

I found this that may be helpful

I find deep diaphragmatic breathing helps a bit, more that you concentrate on the breathing rather than anything else.

Let us know how you get on. You can do this.

:smiling_face_with_three_hearts:

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Thank you. I’m going to call the gynae clinic and explain how anxious I am. With my uterus being in a less usual position (I had to press my tummy for the internal ultrasound so they could see everything it’s that far back) I’m so worried it’ll be more painful. The pain when they clamped my cervix last times was agonising.

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I understand how you feel . The Diazepam is a good idea as is calling the clinic - please tell them you intend to take the Diazepam but they may have the facility there to give sedation and pain relief . I had the opposite problem to you in that they couldn’t get a coil in at all - unbeknownst to both my myself and my GP there was a fibroid blocking the neck of my womb and he couldn’t get the coil in around it though he tried for a considerable time - maybe 40 minutes with my permission of course. Luckily I had taken 2 Cocodamol 8/500 before the procedure which I had bought over the counter at the Chemist and that helped a lot - I’m not sure I would have managed for that long otherwise . In the clinic there should be someone with you that can hold your tummy if necessary to help with the position of your womb and with the better facilities and equipment they should be able to locate and remove your coil fairly quickly I think. If you really feel you can’t face it you could ask if you could have it done under general anaesthetic - this would normally mean waiting but given your diagnosis the fact that the threads are missing and your retroverted uterus / difficulty in inserting it they might be able to do it as urgent - might be worth asking if you would prefer that . .Sending love . Xx

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I’ve always found smear tests painful, as they are gaining access. That is until the gp who did my last smear test told me to always demand they use a long speculum - as my cervix is a bit further away than “normal”. It really helped when I had my biopsy, it removed pain that I’d always had whenever a medic has been doing their thing down there……

Same might help you too?

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I spoke with the gynae secretary today and she was so reassuring. I couldn’t help but cry as it’s so worrying for me but she was absolutely lovely. She talked about other pain relief they have and mentioned something which looks like a vape. She said if it’s not possible to get it out they’ll do an urgent referral to have me back again, to be sedated and removed it that way. I feel so much better having spoken to her. She said that she would personally email the consultant to let them know I’m exceptionally nervous and they will be able to reassure me.

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Hi. I had to have a Mirena Coil removed in the past which had the strings missing. It had been in a long time & and attempts to find the threads had been painful and unsuccessful . I had to attend a special clinic for it’s removal. It was painful but the pain only lasted about 30 seconds, and it was a relief to know it was out. You will certainly not be in pain for 10 minutes. The clinician will talk to you abd examine you and get things ready. There is no problem to have a retroverted uterus, 20% of women have one.
You’ve done very sensible things to get diazepam and also having spoken to the secretary. They will give you extra time if you need it. Make sure you take someone with you who will support you & drive you home. You mustn’t drive after taking the diazepam. I would take painkillers as well. Take both about an hour before the procedure on an empty stomach as the absorption will then be fast. Practising slow breathing will also help during the time you are there.
I am a retired GP so have seen things from both sides. It will not be as bad as you are imagining. Try and forget about it until the day of your appointment. Yes the amount of progesterone is small and absorption mainly local, but it would still be good for it to be removed for your future. You will be able to count it as a big personal achievement once it’s been removed. You’ve got this!

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Good to hear from a GP but every woman’s experience is different. I don’t know what your pain threshold is and you don’t know mine. Emotions come into it, stress, a fear of the unknown etc etc. 5 minutes of excruciating pain may seem to last forever for some people.

I would rather have anaesthetic for dental treatment bu we didn’t have this when we were children - those were the days

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