Tilted Uterus and Mirena Coil - Endometriosis UK

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Tilted Uterus and Mirena Coil

PunkyPeanutButterCup profile image

Just wondering how many of you have been told you have a tilted uterus and that it'll be hard to fit the mirena coil.

Saw my gyne back in November, he has advised me to have the mirena coil fitted, which I'm reluctant about having. At this point tho pain and symptoms are worsening so I'm really considering having it done. Also the reasoning behind having it fitted is there.

He said that my uterus seems to be permanently titled so it will most likely be a day case to fit the mirena coil. Camera through the belly button to see where to fit it.

Just wondering how many of you have been in this situation? Also if anyone has any advice or has had positive experience with the mirena coil that would be helpful.

Many thanks Fay x

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PunkyPeanutButterCup profile image
PunkyPeanutButterCup
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11 Replies
GreenViolin profile image
GreenViolin

Hi there. I have a retroverted uterus, i.e. tilted backwards and I just had my fourth Mirena fitted during surgery last Saturday. I’ve had two fitted while awake and two during surgery. I much prefer to have it done during surgery as the pain is off the scale, but I’d still have it done again while awake if I have to given the fact it stops me periods, which were such a huge problem for me.

Ironically, of the two times I’ve been awake, the easiest was when a GP at my practice did it. The other was done by a gynaecologist with ultrasound for guidance, and that took over an hour as I was spasming with the pain. My cervix is really tight and she didn’t quite believe me when I said I’d need a small speculum, but the pain of having the larger ones inserted even before she tried to put the Mirena in was all a bit much for me. In the event, she had to use the smallest speculum she had.

No-one has ever suggested using a camera for me, but I wonder whether the tightness of my cervix actually causes more issues than the retroversion.

One thing I’ve learnt is not to be stoical about the pain. I have a tendency to grit my teeth and get on with it, but that doesn’t help in a procedure which goes much better if you’re relaxed. It’s better to be upfront about exactly how much pain you’re in. It’s also worth taking paracetamol and ibuprofen beforehand, and seeing if they can give you some local anaesthetic.

PunkyPeanutButterCup profile image
PunkyPeanutButterCup in reply to GreenViolin

Thank you so much for responding and the advice. I've heard alot of mixed things about the coil and some people say it's really painful to have fitted, others not so much. He's reluctant to do surgery again. That's why he's proposing local anesthetic and a camera through the belly button to see how to fit.. sounds like an ordeal to me..I always find the speculum really painful so never an experience I'm looking forward to when I know there involved..

Can I ask how you feel you've benefited from having the coil?

GreenViolin profile image
GreenViolin in reply to PunkyPeanutButterCup

My periods right from when they started age 11 were irregular, long (sometimes over a month), usually only had a few days between periods, extremely heavy with clots (I used to bleed through my clothes regularly) and extremely painful. I was always told by doctors that it was perfectly normal to have period problems, and so had to carry on with this constant burden. I honestly thought it must be me being a bit pathetic and not able to cope with what most other girls / women did. Going on the Mirena in my early 30s and my periods stopping was just such a relief. It left me with *just* the pain from the endo / adeno to deal with.

Sunset-lady profile image
Sunset-lady

Yeah they couldn't fit me one even in surgery.

1Poppy1234 profile image
1Poppy1234

I have a tilted uterus too and I've had the coil since I was 38 so about 13 years now very painful but always had mine fitted at the GP and last one with surgery. My periods never stopped despite the mirena though. The consultant I have now thinks it would be better out such mixed opinions with things. X

PunkyPeanutButterCup profile image
PunkyPeanutButterCup in reply to 1Poppy1234

Thanks for responding, gp says they are unable to fit when I've been for a consultation and both gyne I have seen said it would be a struggle to do without guidance. Strange how it stops some people from bleeding but others still do bleed.. There's always mixed opinions unfortunately.. Can I ask how you feel you've benefited from having the coil?

1Poppy1234 profile image
1Poppy1234 in reply to PunkyPeanutButterCup

Initially my bleeding was lighter and has remained light but now lasts about 7 days although for over the last year I've bled for about 7-10 days with the coil. I have a few friends who don't have periods at all with it though. My Gynae consultant said for me to have mine removed as it's a foreign body in your uterus it could be making it worse. Yet the previous consultant wanted me to carry on with the mirena. It isnt painful to have it removed only to have it put on. So there's probably nothing to lose. Hope you get some help with it all.

Orlaf profile image
Orlaf

I had coil fitted during surgery in August. I have also a tilted uterus. I never looked back it's really with my periods. Orla

Bubble-z profile image
Bubble-z

hi,

I’ve been diagnosed with stage 4 too and have tilted uterus which is cause by endometriosis. Endometriosis can shift the organs due to adhesions it causes. Endo is horrible, it is not fatal but it causes lots of complications.

coletteholt profile image
coletteholt

Was diagnosed with deep filtrating endometriosis and adenomyosis in 2019 following an MRI, and I am now awaiting a laporoscopy (been waiting over a year) and want to be under anaesthetic for that experience. Having a mirena coil was the best thing for me, as stopped alot of the pain and heaviness of bleeding, though it is due to be replaced (every 5 years). I am willing to take a hysterectomy if they decide that is required (after laporoscopy). Seeing my consultant in march.. but the treatment has been very slow in my case... waiting a year at a time to see someone!

PunkyPeanutButterCup profile image
PunkyPeanutButterCup in reply to coletteholt

Thank you for sharing your experiences. I hope you get the care and treatment you deserve soon. It's frustrating I know how you feel, seems the same in many cases, long wait times. I have decided I'm going to have the mirena fitted, seeing as my symptoms have persisted and many people have said it's helped, hoping it will be the same for me. Seeing my gyne at the end of April. This will only be a consultation tho, to determine wether he will be able to fit normally or not. I have a feeling this will end up being an ordeal if I'm honest.

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