Does anyone have Mirena coil stage 4 endo... - Endometriosis UK

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Does anyone have Mirena coil stage 4 endo and diverticular disease

persil profile image
5 Replies

I had a Mirena fitted in January to avoid hysterectomy still spotting only now my Diverticular has become inflamed this is the second time in a month just out of Hospital 10 days ago and another flare up its so painful made worse by the scan I had on Wednesday so more antibiotics buscapan anti sick and not sure if i'll manage to stay home the weekend or end up back in hospital. I'm seeing the general surgery consultant on Thursday then the gynae consultant on 18th .

Just feel alone my daughter and husband have given up because i'm always ill well they try hard to understand but its hard for them my daughters at university who is also unwell herself and my husband has depression

I'm very allergic and reactive to most drugs I have panic attacks and i'm very scared if I need surgery to my bowel or hysterectomy but I don't have a life at the moment sorry I try so hard to be the best person I know and help everybody I also have a stressful job and my boss isn't very understanding

Is anyone out there who's experienced these problems such as intermitten diarriah bloating etc and did you have surgery has it worked for you

Just feel really down and i'm not getting any younger HELP!

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persil
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newpassword1 profile image
newpassword1

Hi! I have stage 4 Endo and had a Mirena coil fitted in October 2012. The first 3-5 months were quite bad after the insertion of the coil but after that it seems to have settled down with only occasional pain but nothing like it was before (being sick, not being able to move etc etc!) I also have the CA125 blood test which raises and lowers (highest being 192) back down now to 92 - I had thought about the surgery that they offered as I have kissing ovaries and a nodule on my bowels but as my pain had decreased I thought I was better of with out it - but! A recent scan showed that my cysts on ovaries have grown in 6 months so I have asked for the surgery, just waiting for a reply from my consultant Mr Whitlow with a date! Hope your feeling as well as can be expected its really hard but I thank god I've had my kids as I am now unable to (I'm 33) stay strong x

Bean18 profile image
Bean18 in reply tonewpassword1

Hi newpassword1, just wondered if you have had your op under Mr Whitlow and how it went.

I have stage 4 endo, a frozen pelvis and a nodule - have just seen mr whitlow again today and now waiting for a date for my next surgery so keen to hear experiences from others who have had similar surgery under Mr Whitlow.

Thanks

persil profile image
persil

Hi

Thank you for your kind reply can I ask what the CA125 blood test is sorry I hope i'm not being thick. Do you have anaemia? I'm anaemic but can't tolerate taking Iron and I've tried all sorts of Iron tablets liquid and natural occurring.

Endo for me is permanently having bowel problems. Good luck to you hope you have made the right decision. Its so hard and worse as you age i'm 52 by the way but i'm a young 52 as my daughter tells me.

wobblytulip profile image
wobblytulip

I was diagnosed with Stage 4 endo in my first lap last June. I had the Mirena fitted then, and then went onto have a second lap in September. I still had some bowel problems too - mainly bloating, but also sometimes diahorrea or constipation too. So eventually whilst reading around to learn more about my endo, I discovered that there is a 15 - 20% higher incidence of coeliac disease in women with endo than in the normal population. Coeliac disease is an auto-immune condition. We still don't know what causes endo, but it may be an auto-immune condition too.

Anyway, assuming you're still eating food containing wheat, barley and rye, I would recommend asking for a blood test for coeliac disease at your GP. Easy to diagnose and I have found a gluten free diet has reduced my pain and eliminated the bloating etc. The website coeliac.org.uk has good information.

persil profile image
persil

Hi thank you for replying I have been tested in the past and went on gluten free diet but nothing changed and the results were negative.

I'm not great with wheat so I avoid brown bread any spices and have a very bland diet. The bowel problem gives me more problems than anything else just hoping the Mirena coil isn't contributing to my problems as I can't work like this and have had 1st stage meeting already at work.

Persil

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