Endometriosis UK
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Very Painful - advice needed please

I have the mirena coil in over 4 years, the endometriosis pain is getting very bad again. The GP said the mirena coil will come out next year, but she wants me to go on the mini pill in addition. I feel I need to get back to gynae, and she can only refer me to my local hospital and not to the endometriosis specialist elsewhere. She only intends to refer me next year if the scan is clear. Can I have your comments please? Thank you.

2 Replies

Hi Starflower.

I think you need to see another GP if at all possible at your DR's. It's worth finding out who the head GP is and then tell them when you see them that you saw your DR and you were not happy and would like a second opinion/referral.

I had my diagnostic laparoscopy in 2010 with laser removal and a mirena coil inserted. I was told my endo was stage 3, but it would appear as far as I've been told, that I was lucky not to have anything stuck together!!

I still had pain and discharge after the op and so the gyne suggested Zoladex for 3 months.

After the 3 months (9 months after the op) I was still having pain and the gyne said he wasn't sure why I should still be having as much pain as I did. He gave me two options, 1. to get referred for excisional treatment or 2. to remove the coil and try for a baby.

I wasn't sure about having another op at that time and as much as I have always wanted kids, it wasn't quite the right time for us.

I was still having constant pain, more than I thought I should be, but carried on with the coil in the hope that it was slowing the endo growth down and one day that would contribute to trying for a baby.

After getting married last year, I had the coil removed in Feb this year and we have been trying for a baby.

I have to say that I think the coil created my pain to be a lot worse!!!

So far we have not been successful, so we made an appointment to speak to the same GP about TTC who initially referred me to the gyne. I wasn't sure what to expect, but he referred me back to the same Gyne to discuss the options.

I am now recovering from a second laparoscopy that the gyne had wanted to do to see what was going on with the endo and to carry out a dye test.

I haven't had my post op consultation, but have some paperwork to say that the endo was not as severe as last time and that the dye test seemed ok :-)

I really do think you need to see another GP and say that you would like to be referred to see your gyne/consultant again now, not in another year!!

Good luck...sometimes you have to make a little nuisance of yourself. If you don't get the answer you want from GP 2, ask them how to make a formal complaint??!!


Hi Hayles,

Thank you for your comments, as it was very useful. I agree with what you have said.

The scan showed a very small ovarian cyst, which the hospital radiographer said they usually disappear.

I will see another gp in due course.

Love starflower xxx


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