very heavy bleeding/clotting

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Well, it's now over a year since my diagnosis.

I'd been bleeding on and off since March and once I was diagnosed (1a) in June, I started to look at treatments,

I was advised that a straightforward hysterectomy would be too dangerous as I would be at very high risk from the anaesthetic (heart/lung/kidney issues). After much discussion, the mirena coil was fitted in September. The bleeding never stopped, it became very heavy, with either very thin, fast flowing blood or huge blood clots, often without warning and only just enough time for me too get cleaned up before it all started again. By February, the coil had been forced out with the clots. It was replaced but only lasted until May when it came out again. The next date to re-insert is the end of June. The bleeding continues - often so heavily that I can't leave the house for days. I'll have had no treatment for nearly 2 months.The cancer is still graded 1a.

Has anyone else experienced problems with the coil causing so much bleeding/ having no effect on the cancer/ causing issues with quality of life? Did it eventually work or did you move on to a different treatment? Any other advice?

Thanks, Suzanne

MrsBJH over 2 years ago

SkippyT.

Hi Suzanne.

Welcome back! Nobody should suffer bleeding at the rate you're going through! Were you assigned an CNS when diagnosed? I'd contact her tomorrow or try to get hold of your Consultant via his secretary. It seems because you're staged at 1a you've been put on a back burner, normally it's 8-10 weeks from diagnosis to hysterectomy but by now your team should have been able to work out a plan taking into account your other health issues.

Give the nurses on the Macmillan Support Helpline, freephone no 0808 808 0000 and ask their advice, they'll be only too pleased to help.

Come back and let us know what happens.

Hugs, Barb xx

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SkippyT over 2 years ago in reply to MrsBJH

Hi Barb - so nice to be back (not!) and thanks or your response.

I do have a lovely CNS and I speak to/email her most weeks to update on the blood loss - bet she's thrilled with that! :-) But the worst of the bleeding seems to be always at weekends! She has managed to get me the June re-insertion date as an addition to a list. - there have been problems in the past. I've drafted an email to send later today - not sure about attaching photos - may save those for when I see her face to face! I'm concerned about the amount of blood I'm losing, but recent tests showed I'm not anaemic.

The consultant has said that if the coil slips out again we should look at radiotherapy so I need to do some research on that next.

Suzanne x

MrsBJH over 2 years ago in reply to SkippyT

SkippyT

Have a look at the Radiotherapy support thread inc brachytherapy which the ladies here have written, they'll give you some tips and you could always reply to a post for more advice.