I’m in more pain since being diagnosed an... - Endometriosis UK

Endometriosis UK

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I’m in more pain since being diagnosed and getting the coil fitted! Has anyone else had this or is it in my head!?

Trekky00 profile image
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I first got my period when I was 12 and they have always been terrible, I told my mum and she told me it was all normal and periods are generally very painful and there is a lot of blood, but I always thought they were way too painful to be normal (In her defence I also thought my birth mark was cancer when I was 10 so I was prone to hypochondria) anyway when I was 15 my parents sent me for scans because my periods went on for two weeks at a time they showed nothing so I just kind of got one with it. I was put on the combined pill which was really effective for pain and timing control but I had to be taken off it because of a breast cancer risk in my family the next contraception I was put on gave me a 4 month (more or less painless ) period and so finally at age 19 they turned to the coil. At this point I was unaware there was anything wrong with me I thought this was all within normal range. Getting the coil fitted was excruciating and I’m not exaggerating about that I’ve broken a lot of bones and this was worse the doctors kind of just looked at each other and then carried on. Anyway after this I talked to my sister and did some research and I found about endometriosis meanwhile the coil was causing me a lot of pain but I knew this was normal for the first few weeks. When I went for my check up I brought it up and before I could even show them my symptoms diary the doctor pretty much: yep we know it was pretty obvious. I was initially annoyed that they didn’t tell me but now I’m wondering if the knowledge is actually making my symptoms worse, perhaps it’s psychosomatic? I guess I’m wondering if anyone else has experience worse pain with Mirena coil. I’d say my period pain hasn’t been this bad in years but it was definitely this bad when I first started. Any advice?

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Trekky00
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Fragarach14 profile image
Fragarach14

I had my coil fitted when i had my endo treated under general.... I have always had painful intercourse, my periods started when i was 8 and a half, and literally i thought i had been stabbed in my sleep...it was terrifying, they have always been extremely painful... originally was diagnosed with PCOS and told to get on with it, as i was always a hairy child.... like a monkey? :P

When they told me after my lap i had stage 3 endo i was super nervous, and excited that the lap and coil would help me....alas i was disappointed....my pain has been WORSE since my coil was fitted, its a great contraceptive....as i am bleeding 99% of the month....i get two days off then its back to the start....those two days are different each month, so i cant follow it.....

I got told by the NHS i should be better....they treated what they could in my lap and to get on with it, go to a pain clinic, for the 6th time to be told they cant help me because it is not in my head :| I went privately, he did an MRI, and found it .... well....nearly everywhere....bowel, bladder, kidneys, diaphragm, gallbaldder, appendix, pelvis....ovaries (its back after the Lap already) so yeah.....

I can safely say, i am worse after the lap and the coil....than i was before, and part of me wishes i never had the lap or teh coil fitted.... my private doctor started me on desogestrel last month, i am one month in....currently no better....but i have more symptoms than i did before? LOL.....5 more months to go to see if it helps, then we try injections.....and try to stop my cycle altogether, i would happily pay someone 10 grand if they would take all of it away.... i dont want to conceive naturally....as it hurts too much to even do the deed....so i have no use for it..... :( i hope you get some answers soon....

Trekky00 profile image
Trekky00 in reply to Fragarach14

I’m so sorry to hear you’ve had such a rough time of it! Yeah the whole waiting six months thing is awful although I know why we have to do it! Honestly I completely understand what you mean I’m nowhere near as far in the process as you and I’m already ready to say just give me a hysterectomy and I’ll adopt.

I hope this works out for you!

thughesx profile image
thughesx

The coil has made my pain worse too since having it fitted during my Lap! I think for some of us it doesn't help but then others it is fantastic. Unfortunately we are the ones where it makes things worse!!! xx

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