Endometriosis UK


Was diagnosed with stage 4 endo around 14 years ago, after emergency op, lap, zoladex and IVF. The Dr advised continuous microgynon. So for the past 8 years have been free of pain. However last year Dr suggested it was time to come off the pill and try marina coil apparently age is now against me. The pain during fitting was excruciating wasn't given option of Anastasia and the pain eventually settled after a few weeks. Didn't get my 6 week check, partly my fault because of the pain experience of last visit wasn't in a hurry to be poked n prodded again. Over the months felt as if things were settling nicely. But one day couldn't move for pain, hips numb and waking in the night in pain. So old memories couldn't put off a visit to the Dr. Outcome so far can't find coil, can't find neck of womb but can find what feels like a cyst. Scan appointment now arrived, and symptoms seem to be getting worse. Worried sick, sorry for the long rant guess just need to offload.

2 Replies

The uterus can and does swallow up the strings from time to time - more a case of sucking them up , but they can and do come back down of their own accord.

mine has done this a number of times. Gave up checking well over a year ago - so have no idea what the strings are doing right now.

The pill can make you more likely to develop an ovarian cyst and the coming off the pill and having periods while the mirena is settling in may just have been enough to fill up a cyst which is causing you pains. These cysts usually do go by themselves rebsorbed by the body - but there are times when they burst explosively, or just spring a leak which hurts all the time, or they just gently expand every period getting larger each month.

A scan can determine if you have a cyst, how big it is, where it is located and also sometimes determine what the contents of the cyst are and whether it needs surgery to remove the beast yet - or can be left and kept an eye on hoping over time it will go all by itself.

IF the mirena is shown on the scan still in the uterus where it is meant to be, then the missing mirena string mystery is solved.

These strings do wander up and down. It is of no consequence until the day comes for the mirena to be removed or replaced. If at that point in time the strings are up north on their travels then you would need to go to hosp for a special grabbing tool to be pushed up through the cervix to pull the mirena down

which is bound to be ouchy.

My advice then if like me you find these procedure darn painful is to wait a few weeks keep checking every other day to see if the strings have come back down and when they do, then popback to get the mirena pulled out.

Mine went walk about a few times. As i said I have given up checking because it wasn't going to make any difference. Once the periods have stopped then youknow the mirena is still in there doing its job.

If the stopped periods have returned and you can't then feel the strings with a finger, there is a chance the mirena has fallen out without you knowing.

The most critical stages are the 1st few weeks after insertion. As the weeks go by the chemicals in mirena cuse the cervix to go in to overdrive producing cervical mucus which builds up round the mirena and strings creating a plug of goop to hold it more firmly in place.

It does sound to me like mirena is fine, strings are sucked up for now, and you do have a cyst that popped one night - the type of pain from a bursting cyst is paralysing. and that is what you described.

You daren't or cannot move the pain is so intense. Whether the cyst burst completely or leaked a lot, the problem is they can just as easily refill up again with the following period and continue being a royal nuisance. Hopefully this scan will answer all your concerns, and the mirena can be left to carry on doing what it needs to do in the settling in months to stop your periods.

And the cyst can be identified and your surgeon can decide what he wants to do about it.

Having the cyst drained or removed doesn't prevent a new one forming. We all get them - most of the time we don't notice and most will come and go by themselves without causing trouble. So even if you do get a new one - it doesn't mean it will repeat the same symptoms as the current one has given you.

For pain relief for leaking cysts - Naproxen or Diclofenac (Voltarol) at prescription strength are the ones to ask your GP for if you don't have any supplies of them at home already. cysts can become extremely painful and opiate strength pain relief might be needed in due course - so do be sure to discuss this with the GP and get the strengths you need to tied you over till surgery if that is on the cards for the future.

Mirena insertion can also cause pelvic infections too - though they tend to give you more of infection symptoms like fever and malaise. The fact you reported the sudden paralysis pain is certainly more indicative of a cyst issue than an infection issue.

Fingers crossed you get your good news answers from the scan.


Thankyou for your reply, mirena now been in for a year, initially after insertion did get an infection, but antibiotics sorted that out. Not had a period in about 10 years now and must say have definitely felt the benefits of the coil being fitted. Guess after being pain free for so long I have become a bit of a wimp when it comes to pain. For the past week have had to take diflafenac and tramadol. Feel uncomfortable, bloated, got a bit of a limp and pressure on bladder. Fingers x as you say will get better soon and hopefully without surgery. Again thankyou for your reply. Have read a lot of your posts and you seem to know your stuff it is appreciated.


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