Three months after laparoscopy and now have coil as well as pill yet the pain seems to be returning?

[Drakesie]

I had my first laparoscopy in April and was diagnosed with severe endo and some of it was treated but some was left (adhesions to bowel, ovary, Fallopian tube and pouch of Douglas). I was fitted with a Mirena and then also prescribed with the pill back to back as I was still experiencing pain. Now after two months where the pain seemed to be improving my symptoms are starting to return. Is it normal for the endo pain to continue even when I'm on the pill and coil?

[Impatient]

yes..until the coil has had enough time to start to work properly and actually stop your periods (usually about 5 months) but even then it doesn't always stop the endo pains.

The main bonus is that by stopping your periods, it considerably reduces the risks of menstrual blood (and uterus lining which has shed) from back tracking up the fallopian tubes and out in to your tummy area and irrtating the tissues and causing more pains that way. Any endo which is alreay nesting in the tummy area and has not been treated will still be active too when you are on a period and also any adhesions which were cut back and have regrown since surgery (they always do) can be painful too.

Having said that, once it ets going and does stop your periods hopefully pretty soon, you shouldn't have period pains and cramps and the mess of periods and not need any tampons or pain killers for that. Which does make a huge difference to quality of life.

There will still be other twinges and tweeks and pains from untreated endo and the occasional ovarian cysts growing but generally speaking things do improve considerably once the mirena is actually working properly.

Give it a chance and then in another 3-4 months see where you are at.

By then the mirena should be doing what it needs to do, and if you are still in a lot of pain, more pain that pain killers can cope with, it could indicate that the pains might not be from endo itself being active but from other damaged nerves, or adhesions or something else entirely.

At this stage it is too soon to be sure, and while the mirena should be cutting back the periods it is unlikely to be coated enough to have stopped them fully just yet. Stick with the pain killers for a while longer and then hopefully things will improve a lot for you.

It doesn't suit everyone, but if you persevere it really can make such a fantastic difference that it is worth putting up with and giving it a decent chance.

[memyselfi]

It took 6 months for the Mirena to make a difference to me, but as it only acts on the uterus and not outside it I am still in considerable and increasing pain. I had a 'period' last week with only the very lightest spotting, so the Mirena is working, and yet I had pain close to what I used to experience before the Mirena. I know this must mean that my endo has spread significantly again.

Like you, my surgeon did say he was unable to remove all the endo, and I can't take the pill so it's not surprising that my pain is increasing, although I wish I had been told that this might happen before the op. Having the Mirena does mean that I am less tired as I lose less blood, so it does help to some extent and for the last six months I have had less pain, although the six months when I was waiting for it to work weren't good at all.

I don't know if the pill does make any difference, but perhaps the management of this disease for many of us is about making incremental changes which add up to being able to cope rather than being defeated by it, so maybe look at your pain meds as well and talk to your GP about what else they can prescribe for you.

Good luck

Px

[Drakesie]

Thanks for that. I've had a really bad couple of weeks. I thought the coil would have kicked in by now...guess I just have to be more patient. Thx x

[kyla78]

Yes that's normal my coil took months to settle, but it was totally worth it x