Mirena coil severe cramps no pain medication is helping

[USA19891]

I had my first mirena coil fitted 1.5 months ago. The cramping I’ve had since has been so intense but ibuprofen and paracetamol are doing nothing. The reason I was given the coil was for painful periods but I’ve been in more pain since I got it fitted. At least before pain relief would work but now it’s like I’ve not even taken anything. A hot water bottle makes it worse. Im literally going to lose my job as I am off sick again. Crying in bed crying out in pain. The nurse at my GP just says it’s normal to have cramps. They feel like my most painful period but with a bit more intense feeling almost like it could knock you off your feet intense. It’s so bad I feel sick sometimes. I know if I ask them to remove it they won’t. The nurse couldn’t even find the strings the other week. I ended up phoning 111 and waited in urgent treatment for 4 hours because I was literally screaming in pain like I was having contractions. Nurse checked the strings the next day but couldn’t find any. She checked with a speculum and her fingers. They’ve sent a scan request but nothing has come through yet. Please can someone help and tell me what I can do to stop the pain thank you x

Is it possible for you to arrange a private scan?

@ajandjjmum I’m not sure how to, I’ve never done one before. I’ve just had a text through it says the scan will be at the end of October.

If you can't cope with the pain, look at the list of gynaecologists at your local private hospital. Then call and speak to their secretary, and find out what the cost would be for them to do a scan to check your coil, and how quickly they can do it.

It may be that they require a letter from your GP, so you would then call your GP and tell them that they need to send a letter of introduction to whoever, so that you can have a scan asap.

No doubt an expensive way of doing it, but if you're in such trouble, worth it if at all possible.

@ajandjjmum that’s really helpful thank you

Endometriosis is a common cause of painful periods. Although a mirena is often fitted for this purpose, it is not suitable for all women.

It seems here that with the mirena, they have just tried to treat the symptoms but the cause needs to be determined as well. Go all out now to properly establish the cause of your painful periods.

Bear in mind though that an internal ultrasound scan will NOT detect endometriosis if it is present. It’s usually diagnosed through a keyhole surgery op called a laparoscopy.

I would second the recommendation to call your local private hospital and see a gynaecologist there ASAP.

Hypothetically if I started any investigation with a private hospital i.e a scan, would I then stay with them for all further treatment? So if they offered me a laparoscopy, would I have to pay them, or would it be with the NHS? I’m guessing if my NHS gynaecologist doesn’t think I’ve got endometriosis, then I will need a second opinion. I agree with the PP, the consultant gave me the coil intending on covering the symptoms but not investigating the underlying cause of both painful periods and ovulation. She told me that she doesn’t think that I’ve got anything wrong with me just that it’s probably normal for me. This is because I told her that I had always had painful periods but looking back that’s not true. I would say they started becoming unbearable at around 18. So from 12-18 they were pretty normal with some cramps but nothing extreme. She told me that endometriosis starts in your 20’s, so if I’ve had painful periods always then it’s very unlikely that it is endometriosis. As mentioned above, that’s not really true, I’ve been suffering for around 10 years. It’s definitely not normal or acceptable to suffer like this no matter what she thinks. Im definitely going to get a second opinion. 😞

Whether you would have to continue as a private patient I don't know - I think it depends on the attitude of the consultant. I have known them move patients from their private list to the NHS - assuming they do NHS work.

If you think endometriosis could be the cause, then research the specialist in your area, and ask for an appointment with them.

DD did the same for another gynae issue, and the chap sorted her out straightaway - gave her a prescription that she'd have waited months for on the NHS, and it's done the job. Best £600 spent ever! Hope you can get the same help OP.

Or find your local private hospital direct:

www.nuffieldhealth.com/hospitals

www.bmihealthcare.co.uk/hospitals

www.spirehealthcare.com/locations/

I would normally check the consultant also works in the NHS as well though, ideally get a recommendation. Although the care you’ve had so far is so bad that 🤷🏻‍♀️

You shouldn’t have to pay, you shouldn’t be left in so much pain.

Have you actually spoken to your GP and told them the level of pain you are now in?

The last person I spoke to was my gynaecologist at my referral appointment. She was lovely but she just kept pushing the coil. She said IF she did find some spots of endometriosis she would only recommend the mirena coil anyway. So I agreed to it and she did it for me. I could potentially go back to her but I think that’s a bad idea. I will take a look at those links thank you, very handy

This might be helpful: www.endometriosis-uk.org/seeing-endometriosis-specialist

The first mirena I had my first period was really painful. Cramps still really bad after paracetamol and ibuprofen. I don’t normally have painful periods. It was fine after that one period and know I don’t have anything more than a little spotting. It might just be a one off.

Also: www.bsge.org.uk/centre/

You’ve been poorly served to date by that NHS gynaecologist. I would certainly get a second opinion. The coil is cheap and that is why it is also offered. Whilst it has its place it’s not suitable for all women. I do not think it’s a licensed treatment for endometriosis but I will stand corrected if anyone can tell me otherwise.

Endometriosis in my case started upon onset of menses at 14. I did not realise this until I was undergoing fertility treatment in my late 20s. A laparoscopic type op which is keyhole surgery revealed the endometriosis present.

@AttilaTheMeerkat thank you for your reply, I really appreciate it. How are you feeling now, do you still suffer with the pain?

I'm on my 5th Mirena and have one in since my late 20s. I usually find you get this cramping for about 3 to 4 months until it embeds into your uterus lining. I was convinced that they'd perforated my uterus with the last one I had 2 years ago - the pain was unbearable at times, and it took nearly 6 months to settle down.

I was convinced that my body was sensing a foreign body and was trying to expel it.

Id ask for stronger pain relief from the gp while you're sorting everything else out. Paracetamol and ibruprofen wont touch the sides if it is endometriosis pain, or even if it 'just' the coil settling in. Really do push for yourself here, do not accept that pain is normal and ok.

I feel a lot better these days and certainly did in the years post lap surgery.

I have had problems with uncontrollable peri menopausal bleeding (due to estrogen and progesterone fluctuations so not linked to previous problems) . I had ablation surgery to treat it.