Mirena coil issues.... HELP PLEASE X X - Endometriosis UK

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Mirena coil issues.... HELP PLEASE X X

Jofus89 profile image
3 Replies

Right so 7 weeks ago on the 22 April I had a coil fitted. For the first 5 weeks I had no pain at all. All I could think was what a result and how lucky am I!!! BUT two weeks ago my pain started coming back. It was manageable at home until yesterday when I ended up in a&e. Yesterday morning I saw the nurse at my gp surgery, she couldn't get the speculam in more then an inch before I was balling my eyes out in pain. She sent me to the family planning clinic to see if they could help. Before I went I took some extra pain relife including my morphine. The FPC nurse managed to get a finger in to touch my cervix but I cramped that hard I hurt the poor ladies finger. She sent me to hospital where I was an internal scan. I managed to let the registra scan me but I did cry the whole way threw and had to hold my mums hand while biting my sleeve. The dr said my left overy is stuck to something, I have a new cyst, my pelvis is tilted and she can't see my right overy. After my scan she took me to the ward and asked me if I wanted to stay in and have IV morphine. Before I could answer my mum asked could we try pethadine first..... WHY HAS NO ONE GIVEN ME THIS WANDER DRUG BEFORE!! My god ladies, it was bliss!! Morphine has never worked properly one me. But pethadine worked a treat!! And they let my mum take me home on it!!!

This all happened at the same hospital iv had my other laps at. When ever iv been before the staff have been rude and judgemental. But last night I finally met a dr who listened and didn't say things like "so you just have period pains then". And not only did she listen but she told me my last consultant isn't an endo specialist even though his name is on the bsge list and that there is no way all these things wrong have all happened in 7 weeks and he has to have missed a lot or just didn't bother trying to help me. She has referred me to another consultant who is definitely an endo specialist. This amazing lady has also written on my notes that if I return for the same pains then I am to be taken seriously and offered a bed and decent pain relife.

Although I am currently feeling really poorly, emotionally I feel amazing. It's so nice to finally have someone listen to me!!

So back to my original question, anyone got any ideas why after 5 weeks my pains started returning? And will they die down again?

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Jofus89
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Impatient profile image
Impatient

I've had pethedine many many times - absolutely fab stuff !!!

Mine was given for kidney stones and I had glass ampules at home as back up incase I needed to call a GP out in the middle of the night. They carry syringes but not pethedine as it is a class A drug (or was back then).

It works so fast. Why on earth we can't have that for endo pains and leaking ovarian cysts is beyond my comprehension. They are almost as painful as kidney stones.

So pleased you got seen to by someone who clearly does know what they are doing, and if I were you, I'd wait to see what the new surgeon does and says after next op, and see a lawyer about the previous one and the ghastly experience they put you through in April, but not yet...get this cyst and the stuck ovaries seen to first and you can have that done without the need for the mirena to come out or anyone needing to go up the chute with scans or speculums while you are wide awake ...Super OUCH !!

That cyst may be new and causing the sudden change in pain levels. mirena and indeed any of the hormonal menstrual controllers can make the body more prone to developing ovarian cysts. The down side to trying to stop periods I'm afraid.

I had 3 before mirena with 2 ovaries working and 2 since mirena with 1 ovary remaining so it is about even stevens for me. All of them within 2 years and none causing any problems before then if I ever had any before. i certainly didn't have a clue if there was any issue before.

Cysts can grow rapidly, it is quite possible that only kicked off since the surgery, but the stuck ovaries should not have happened so soon. High time you had a bit of good fortune heading your way Jophus after the March-April episodes.

Brownlow profile image
Brownlow

Hi Jofus,

Really glad to hear you are making some progress with this doctor. I agree with Impatient re seeing a lawyer about your previous surgeon but definitely focus on getting things sorted out first. While you are waiting for appointments etc. write up a record of everything that has happened until now as it is fresh in your mind. Try to date everything too. Your posts on this forum will help you date things. This record will be taken more seriously than a verbal attempt to remember everything. You will also feel better once it's all written down.

I wish you all the best. x

Good morning.

My pain levels do not sound as severe as yours.... But I definitely experienced more pain when the mirena was in. However, my pain started soon after it was put in.

Ten days after it was put in, I collapsed at home in pain. My family called an ambulance and I was taken to hospital. I stayed in hospital three days and the conclusion was that I had a ruptured or leaking chocolate cyst.

My pain eased a lot but I was still experiencing pain on a daily basis. About 4 weeks ago I had cramping pains and bleeding. I often get severe cramps as I have adenomyosis, but these pains felt like I was in labour!

When I went to the loo to try and insert a tampon... I couldn't, something was in the way! It was the mirena! And my body expelled it !

Since then my pain has been almost non excisitant apart from sciatica and thigh pain!

I believe that the mirena definitely made my pain worse and I wouldn't want another one put in.

The mirena did make my bleeding very light and that was brilliant.

I really hope your pain eases.

Regards,

Barbara x

P.S my ovary couldn't be found on a scan but when I had an MRI.. the ovary was found to be stuck behind (and to) my uterus.

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