Advice on removing coil with pv

Hi all

I’m looking for advice. My consultant has advised me to have the coil removed, currently on interferon 135mcg weekly and asprin daily. Not much change to results of blood tests in 6 months so had urgent venesection last week. Was told that having a period would be like a natural venesection as such. But am concerned of heavy periods and clotting. Have read that I may need to stop asprin if periods are bad. Haven’t had a period in 10 years since having the coil so am feeling quite anxious about it.

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Hi @Zoescott1, I can completely understand why you’re feeling anxious about this. I’m glad you felt able to come and ask here.

I’m going to tag our @BloodCancerUK_Nurses , as they’ll be much better placed than I am to talk through the clinical side of what you’re asking, and they may also be able to point you towards useful conversations to have with or questions to ask your consultant before you have the coil removed.

In the meantime, it’s worth knowing that our PV pages do touch on some of the contraception and bleeding considerations for women living with Polycythaemia vera ('PV'), though I don’t think it specificially mentions the coil.

You might also want to talk directly to our blood cancer nurses via our support line, which you can reach on 0808 2080 888 (option 1) or support@bloodcancer.org.uk.

Take care,

Ceri - Blood Cancer UK Support Services

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Thank you very much x

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Hello @Zoescott1
Thank you for posting your questions.
I’m sorry you’ve had to have a recent venesection, I hope you’re doing okay since this.

The question you have raised is great, and honestly not something I’ve been asked about before, so I’m really pleased you have messaged us about this. It is completely understandable that you would be anxious to have your coil removed if it hasn’t caused you any problems in the last 10 years, and your periods have stopped.

Firstly, may I ask, did your consultant actually tell you why they think you should remove the coil?
I do think this is an important question to ask, to understand the rationale behind their thinking and recommendation. I can only guess they suggested it due to clotting risk.
Whilst I haven’t found any direct risk information on this, there is one sentence in the information by Myeloproliferative neoplasms ('MPN') Voice (a small UK based charity): mpnvoice/contraceptives-and-hrt which states that oestrogen can increase clotting risk. However, reading on the NHS website about coils, there seems to be two types available; nhs.uk/contraception/methods-of-contraception
One which releases the hormone progesterone, called IUS, and another which doesn’t release any hormones called IUD or copper coil. As it is oestrogen that causes the clotting risk, and not progesterone, I would ask your consultant why they feel you should have it removed – even if you do have the IUS and not IUD.

In all honesty, I am confused why your consultant would suggest the removal. If you aren’t able to get an answer from them, I would suggest you seek the guidance of either the person that fitted your coil, or a specialist GP who has an interest in contraception or women’s health.

If you are told why you need it removed, this sounds reasonable to you, and you decide to go ahead with it, then I am sure you could be monitored more closely for bleeding.
Also, if you did get heavy bleeding, then make sure to get the right advice and support from a gynae doctor or a specialist GP to help you manage this, as well as speaking to your haematologist. I think is unlikely you would have to stop aspirin, as this offers the best protection against blood clots, but I am sure your team will best advise you.

They may suggest things like; stop taking aspirin a few days before your period is due, or to start on a contraceptive pill, or you may be offered other drugs to help with heavy bleeding (for example tranexamic acid, but I am not sure if this would be contraindicated for you), again, this is something to discuss in the future if it were to happen.

Do know that you’d be more than welcome to call our support line should you wish to go through anything I have mentioned or said above.
Best wishes, Heidi.

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