Endometriosis UK

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?

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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!

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

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Hi,

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,

Xx

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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

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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

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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

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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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