Endometriosis UK
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almost after two years post lap

After very frustrating visits to the gp and almost begging a referral to see a gynecologist (I was told that my pain is caused by very active ovaries - what does that even mean??) I had my surgery in 2013 and was lucky to have a minor case of endometriosis which was almost removed except the bit on a kidney. I had an ok recovery in general and didn't have much thought about it. However my symptoms persisted and even got worse. I was then offered what felt a dozen of different contraceptive/treatment options (no period, no endometriosis eh?). For a person who cannot remember to take food supplements I decided to go with a Mirena coil (5 year hassle free sounded really attractive). Oh what an experience! Wouldn't wish it to my worst enemy. I still have a coil (for almost 1,5 y now) and it seems that it never settled (my doctor was very persistent to keep trying). I feel bloated, my lower abdominal feels swollen, and oh my dear pain. It's so tiring and frustrating as I don't know anymore whether all my symptoms are caused by endometriosis or the coil?

I could have never imagined something like this could have such a negative impact on everyday life! Experiencing all the above 3/4 of the time is depressing. I try to ignore it most of the times (sometimes by wearing loose clothes), and only people close to me know.

I had to leave the work early today because the pain became unbearable. And I get so guilty and that it was not a good enough reason to go home.

I am will 30 in a few months, is this how my life will be from now on?

Does any of you have similar problems? How are you coping with long term effects?

7 Replies

My friend got the same one inserted as it sounds great as it lasts five years! She already has a child and didn't want anymore children just yet. Her coil has now gone missing!!! Yes missing! So crazy! She was told by a doctor that it must of inbedded somewhere. After a examination she now has to wait for a ultrasound to discover where the coil has gone! She's had so much pain!! It gets so serve she's been given a high dose of codeine!


OMG! Sounds horrific. I hope your friend is ok xx

1 like


Due to you being diagnosed with endometriosis already, you are now entitled to see a specialist that deals with endo, there is a list called BSGE have a look find somewhere near you, take it to your docs with a list of your symptoms, if she can t tell you in writing that it's not endo, then you are entitled to further investigation, the likelihood of endo growing/coming back is very high, unfortunately .

Be strong with your docs,

Have a look at a lady on hear called Lindle, she has written very good post about specialist and encludes and contract from the nhs, that you can show your docs,



Thank you, that's very helpful, I'll look into it. I have a 'label' endometriosis even going to see a physiotherapist now that it's been diagnosed. It would be certainly helpful to see somebody on NHS, I had all treatment done privately, but as the endometriosis is chronic (e.g. asthma) is not covered anymore, and I really don't want to see just another doctor who doesn't care. thank you xx


I had the mirena coil fitted 1.5 years ago too! I've had non stop bloating and pain and have been back and forth to the Drs. Recently I had a scare as they couldn't find it in a recent check up so put me on the mini pill (microgynon). My coil is in fact still in so I'm on dual contraception.

Since being on the pill I haven't had one period, I've had a couple of days with pain, and about a week being bloated but nothing compared to before.

Go to your doctors and request being put on the pill as well. I will warn you, the extra hormones do make your boobs swell (I've upped a cup size in 4 weeks).

Good luck xxx


I am just been so tempted to get it out! Everyday I think 'I'll see how I feel tomorrow'. As stupid as it sounds, because I had it all done privately I paid £400 (by a wonderful doctor) to put that in, I want to get my money's worth..

I know it's more a myth, but I never had kids and I wonder whether it could be something to do with that. Oh I guess I need to go to see the GP.

Thank you xx


I thought about having mine out as well. I've never had kids either so I'm exactly the same. Wasn't until I had the pill as well that I realised it works haha.

Hope it all works out for you xx


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