Has anyone else had problems with the coil to treat endometriosis?

[Semilyxx]

Hello! I been at the gp with period problems since I was 12. I was just last week (finally) diagnosed with endometriosis and they stuck the coil in me for now until I can have a laparoscopy. Since they put it in I have not been able to work due to the pain- my bowels are bad, I have no colour in my face I’m exhausted, I’ve not stopped bleeding and the cramps have me double over. It’s like the worse day of my period but it’s been everyday for 8 days now. It is definitely worsened by physical activity- if I sit and read and drink tea it’s bearable but even a shower has rolling on the bed in pain. I want to stick it out because I’ve read so many stories of it helping women with endo. Has anyone else had this problem? Will it pass? Is it okay to ask for a sick note? Should I get it taken out? I’m not sure what to do. I work as a carer so there’s no stopping once I’m at work and at the minute with Covid it’s exhausting emotionally and physically and I just can’t take it. I feel maybe I should move to an office job so I could sit at a desk with a hot water bottle.

[Astep1]

I’ve just been advised to do the same due to waiting times for a diagnostic laparoscopy. I looked into it and heard all sorts of horror stories so decided that it’s not for me. Hope you get sorted soon it sounds like you are going through a terrible time

[GrittyReads in reply to Astep1]

I think you are doing the right thing. Sometimes the coil can exacerbate the very conditions that the endo is causing. It all depends on where the endo is in the abdominal cavity, and if it has been roved properly and fully.

[Astep1 in reply to GrittyReads]

Thank you. I did have a call from my GP today saying that they had received a letter and asking if I wanted to make the appointment to have the coil fitted. I politely declined haha. I just feel like I am more in control managing my pain and stuff with taking my pill

[Starfish123]

I had a coil put in for heavy bleeding, endo was found later. The first two weeks were awful but after that things did improve. I did bleed for a few months but not as badly as I had been. It stopped my periods bar the odd one now and again but the pain wasn’t there like it use to be. I must point out I was over 50 when I had it put in so it might be you are a different age range. I started having lot of bladder issues after 40 which turned out to be early menopause as the issues all but went away with the implanting of the coil.

[GrittyReads]

My pains were never as awful as yours, but I was in my 50s (endo got bad post-pill, when I had to stop taking it due to my age) so things were already easing, generally. However, the first few months after the mirena was fitted, were awful, then it eased quickly - to nothing - and I had 5-plus years of bliss. If you can, try to stick it out.

However, I don't know if things are always worse, if your pains were very bad - I gather that mine were relatively mild compared to whatever many other women go through. It may also depend on what state your uterus, abdominal cavity etc. was in before you had the mirena fitted.

Did you have a laparoscopy? And/or did they remove endo at the same op when the coil was inserted? I think they are supposed to let things calm down and let others read reports of the lap, before a coil is inserted. Also it does depend where you are in the world.

[Semilyxx in reply to GrittyReads]

I had a laparoscopy a few years ago- they removed some blood and said there wasn’t enough endo to remove (I had only had periods for a year). 5 years on and every month I get worse I’m supposed to now get the endo removed but it’s going to take a while for the laparoscopy because of Covid. I have a scan today to make sure coil is in the right place.

I really want to stick it out and was recommended this was the absolute best thing to do (I have asthma also so they want to reduce the chance of me getting Covid). I’m just having doubts now and it was such w horrible experience getting it I feel as though I don’t want it out 🙄

[GrittyReads in reply to Semilyxx]

Do talk to the 'Endo Support' people who run this site - see the Blue, 'contact us' sign to the right side, above. 'Endo UK' should be able to give you the exact and latest (legal and medical ) details and guidance on having a laparoscopy.

There are (supposed to be) checks and measures in place which are there to make sure that laparoscopies are carried out properly - your GP should know these and should be following them. There are different sorts of 'Endo' tissue, and not all general gynaes recognise the different types; plus, some of the endo tissue can be in difficult-to-access places (like tucked in a fold of the uterus), while some endo - eg: any found on the bowel - should only be removed by an Endo specialist. A lot of women on here have had repeat laparoscopies, yet find that the endo just gets worse again in a few months, because the gynae doing the lap was not an 'Endo specialist' and missed the bits causing the problems. My understanding is that the Medics/surgeon should ask you - beforehand - if you only want an 'exploratory' laparoscopy. I would honestly go for this, and make more decisions when you know what they have found. My first lap removed some endo, but the pain became just as bad, then worse, after a few months - although a coil fitted about a year later did cure it - but I was in my 50s by then.

Take care, and do talk to the Endo UK people.

[SaskiClaws]

absolutely okay to ask for a sick note! never feel guilty about how ill this disease makes you. if you can’t work then you can’t work. we’ve all been there