Any advice for dealing with extreme anxiety of having to remove and replace hormonal coil?

[Niahn]

So I had the mirena coil fitted about 2 years ago. Although everything has been great, I had an absolutely horrific insertion (I lost consciousness on the bed and vomited afterwards from the pain). I’m normally able to brush this experience off but tonight I’ve just been filled with this horrific sense of dread over having to replace it and go through that again (even though I still have about 3 years to go). I am waiting to see a gynaecologist with suspected endometriosis and my periods are far too painful for me to go without any sort of treatment. I absolutely love my coil when it’s in but I don’t know if I’ll be able to force myself to go and get it removed and reinserted because I’m so terrified of experiencing that level of pain again. (For context, the pain was on par with my worst period pains - around a 9 on the mankoski pain scale). Does anyone have any advice on how to reduce my fear or anecdotal evidence on how easy it is to have the likes of anaesthetic etc on the NHS?

[FatigueMox]

I absolutely get what you mean. The first time I went to my local GP surgery to have it fitted I met the nurse and she showed me what it is and how they insert it. It looked tiny, I thought it would be fine. Went back for my appointment to have it inserted, I swear to God I launched myself up to the ceiling in pain. They stopped. I suffered for weeks afterwards, I felt like I had been raped. It was the worst experience. Made going home the dentist look like a walk in the park! However I talked with my husband and he persuaded me to talk to my GP, who advised me to go off to the sexual health clinic. Sweating buckets there the nurse saw my distress. I was due for endometriosis surgery in 4 months so she suggested I have it done when I had the surgery.

I had the surgery, GIANT cyst removed (size of a football?!?) coil inserted.

Unfortunately 6 months later on at outpatient check up when I had my scan we noticed it had moved, so we had to replace it.

This time done as an outpatient by the Gynaecologist at the hospital. It wasn’t good, but it got done. However they did say next time I could have it done under a full anaesthetic.

I have frozen pelvis and a number of other medical problems. So if you’ve had a bad experience do talk to your Gynaecologist and GP and discuss your options. Do you really need the coil? What are the other options? If you do need it, what can be fine to make it as painless a procedure as possible?

[Niahn in reply to FatigueMox]

Thank you so much for your reply. Unfortunately the mirena coil is the only thing I’ve tried that’s reduced my pain to a somewhat manageable level so it looks like I’ll need to keep getting it for the foreseeable future. Thank you so much about the information about going to a sexual health clinic too. If I need a laparoscopy (which it’s looking increasingly likely that I will), I’ll try and see if they’ll replace it then and if not I’ll try and see if I can get it done with local anaesthetia.

[DaniCee]

I had my original mirena fitting in February and it was horrific, so painful. It ended up being in the wrong place, so after many months of pain I was told I could have it replaced - but the waiting list was around 11 months. As you have to do with the NHS I pushed back on this - I explained the impact it was having on my daily life, my sex life, and ended up having to plead on the phone with a medical secretary at the local hospital, which was a bit demeaning - but I got the result I wanted.

As the coil was in the wrong place I had to go to hospital to have it removed - I said I wanted to have local anaesthetic due to the painful insertion - the doctors and nurses were all fine and understanding. The procedure itself was a bit uncomfortable but nothing like the pain of the insertion - the local anaesthetic sorts that right out. It sounds like local would be right for you, so please be reassured it’s not a traumatic experience, and the doctors and nurses are all lovely. You can take paracetamol and ibuprofen beforehand, and afterwards as well.

The moral of this long story is that sometimes you have to push the NHS to get the result that you want - you may have to really labour the point around the symptoms and the effect on your life, but you do get to have a say in the treatment you receive. Be mindful of how long waiting lists are on the NHS - so if your replacement is due in 3 years I’d suggest you start the conversation a year in advance with your GP. Find out if they can offer local anaesthetic there, and if not, ask to be referred to the hospital. And keep pushing them if you need to! Good luck!

[Niahn in reply to DaniCee]

Thank you so much for this. I am currently waiting to see a gynaecologist about suspected endometriosis so I may have a chat with them about this when that happens too. Will definitely request some sort of anaesthesia next time because I cannot willingly put myself through that again. Thank you loads about the information on waiting times etc. As much as I’m grateful for the NHS, some of the wait times are ridiculous (I’ve been waiting 4 months for an ultrasound at my GP surgery) but I don’t have the money to go private as I’m a student.

[DaniCee in reply to Niahn]

Good luck with it all sweetie, the waiting can be very disheartening I know. I only had the ultrasound and formal diagnosis in the last year or so, but be reassured that the Mirena does a good job of helping manage the endometriosis, so even with the awful initial experience it’s been worth it!

[Boxclever1]

If you're waiting to see a gynae about your endometriosis, it's likely your next step will be a diagnostic laproscopy. With covid etc, you're not likely to get that for another a year or so, so I'm sure they would happily remove and replace it for you during that procedure (which is under general anaesthetic). The Mirena coil only costs the NHS about £88 (I just googled it!) so they're not going to worry if you get it replaced one or two years early, in fact I expect they would want to anyway, since it saves a future appointment.

[Niahn in reply to Boxclever1]

Thank you for this! It did actually cross my mind whether they could do that or not so I’ll definitely bring it up at my appointment if I’m put on the waiting list for a laparoscopy