Mirena coil for Endometriosis

[Aleks77]

Hello everyone,

My name is Aleksandra and I am 28 years old with very severe Endometriosis. I have been through hell for the last four years and believe me I tried all possible treatments... I have lived in Chicago and relocated to Aberdeen a few months ago, originally I'm from Bulgaria. Back in Chicago my gynecologist tried everything from birth control pills to shots treatment for six months with Lupaneta pack, and here I am again in pain, terrible pelvic pain and heavy periods. I saw my GP over here and she said that I should give a try to this IUS - Mirena coil. I already scheduled an appointment for 3th of August and I am really worried and concerned about that and I don't know what I have to expect on this further procedure. I have enough side effects from my previous treatment with those injections- hair loss, mood changes and so on, but I accepted this. Please, share your opinions and suggestions about Mirena coil? I would be more than grateful for any recommendations!

Thank you in advance!

Greetings, Aleksandra

[rajsam]

hi, i had the mirena coil in May, but im still on the decapeptyl injections too so Im not sure how well its doing its job yet. I have horrible side effects from the injections so Im glad that those have now ended. Ive been bleeding since I had the mirena put in but thats to be expected apparently. The insertion was not as bad as I thought it would be, its over quickly but ibuprofen will help with the pain, I was back at work the next day. I have 4 friends who say the mirena is excellent and they have had no major side effects at all.. that was what persuaded me in the end to get it in, if it isnt right then you can have it removed but try it first x

[hellybaybee]

I'm no expert but I think it depends on what you want because if your looking to start a family you really need the endometriosis removed. I was offered 2 options: mirena coil or endometriosis removal and ivf. I think those options are rather limited. I didn't like the idea of more hormones whizzing around my body - I reacted badly to the pill (I tried different types) and I have a thyroid problem so, although different hormones, mine are already imbalanced (I used my workplace insurance in the end and just had it removed) Presumably they have given you a laparoscopy to check what's wrong? I feel a lot better for having my endo removed, that being said I also have adenomyosis so it will always be a problem to some degree unless I have a hysterectomy. In terms of the hormones, I was told that it is more localised than the pill and my mother (who also has endometriosis - hers was really bad too) was given the mirena coil and said it made the world of difference. Sorry that this was a bit rambling. I guess what I'm trying to say is that it depends on what you want with reference to children but the coil will alleviate the pain/heavy flow and should have limited side effects.

[GrittyReads]

My Endo was relatively mild compared to cases I read about on here. However, it got much worse in my 50s once I had to stop the pill. My GP did send me for a lap where the endo was removed, but it quickly came back and was all much worse - and worsening. I then saw a Gynae, privately and he suggested the mirena. They release only progesterone, which counters the excess oestrogen that is one of the main causes of Endo. I found it wonderful, and after 6 months of decreasing pain, I then had 5+ years of bliss. I'm post-menopause now and had the coil removed a year or so ago, and all still fine.

However, the mirena does not work for everyone, and for many it leads to far more pain. And you may want to have children, so it may not be the best route.

The main issue first, may be whether your Endo has been properly assessed and investigated. I would talk to the advisors at 'Endo Uk' - link at the top of the page. Ideally you need a diagnostic laparoscopy at a good hospital, but where they don't necessarily remove the Endo, but will refer you to a BSGE Clinic (specialist Endo units) where the Consultants are not just general gynaes, but specialise in only Endo, and are skilled at finding it, recognising al the different types, and removing it in the best way. Most general Gyneas cannot do all this, and bad removal often just leads to quick regrowth and bad scarring which makes the situation increasingly worse.

Pleas, read around on here, read books, check other Endo sites (there's a good US one, and Canadian) and talk to as many people as possible: talk to 'Endo UK' ... and then go back to your Dr armed with all the facts, and make sure that what they offer is the best possible route. Hellybaybee may be right about having the endo removed, but you need to know it is 'all' being removed, by the best people, and in the best possible way.

[Suzied2b]

I had my coil fitted on may 16th and have had non stop spotting and bleeding since, and still experiencing pains from the endo. I was told to expect some bleeding and cramps for the 1st 3-6 month to allow the you to adjust to it and the coil to settle down and adjust to you. I'm trying my best to stay positive as I've heard from all my friends that have had it (not for endo) that it was the best thing they did. I'm now 2 month in and it's not been great all the time but have had some days where the pain isn't too bad. As I'm still bleeding whether it be spotting or bleedingredients the endometriosis is still active and fending from it. Like I say I'm hoping to stick with it till noveMaer December to see how I am them.

Insertion isn't he nicest feeling but ibuprofen 30 mins before and a hot water bottle, relax and breath for the sake of the 5-10 mins it's over and done with and it's in for 5 years. You can have it removed earlier if you wanted but don't forget they advise you to try it for alterations 3-6 month.

Xxxx suzie

[FairFacedFairy]

I love my mirena coil! I have tried everything under the sun and had ALL the side effects. I had my coil fitted in a last ditch attempt to get some relief in Dec 2015. It has been so helpful. I no longer have periods so I get relief from all the bleeding. I still get pain but it's pretty level rather than worse around time of the month. I had my 3rd lap 3 weeks ago and there wasn't as much endo as the last time and it's mainly down to the coil. I must admit though that it was painful to fit and I did have horrible cramps for first 3 months but that's nothing compared to life before it!

[Suzied2b in reply to FairFacedFairy]

Hi so glad to read your happy feedback regarding the coil.

With you saying saying you still get pains around the time you would have a period does that mean your periods were regular and that you just know when you would of been on?

I'm hoping to have some relief from the coil. Xxxx

[FairFacedFairy in reply to Suzied2b]

My periods were fairly on-time but extremely heavy and debilitating. My mirena coil has helped with some things associated with bad periods bleeding, nausea, back pain etc. For the first 9 months i could tell when I was supposed to be on and I could tell mid cycle pain and ovulating pain but last 6 months i haven't been able to tell, it's just pain from the existing endo. Hope this helps xx

[Fabbird in reply to FairFacedFairy]

My experience was similar. When I had the second one I also had a lap and the endo was much reduced. But I have found they only last 3 years for me before the symptoms return. Now on my fourth...