Treatment - mirena coil, injections, impl... - Endometriosis UK

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Treatment - mirena coil, injections, implant??

tinker1234 profile image
6 Replies

Hi everyone. I had a lap last year to diganose endo and remove cysts. I also have endo on the bowel but as it was not causing me too many problems they left that alone. In my follow up consultation they suggested that I try the mirena coil to help control the endo and prevent reoccurence of the cysts. I tried to have it fitted before Christmas but they weren't able to do it (I haven't had children and they didn't have the right tools at the GP surgery). I was in a bit of a state about it all really and decided to leave it (luckily the surgery relieved most of my symptoms apart from the backache & fatigue) as Christmas was coming up and I was then going on holiday. I have now contacted my docs again to talk through maybe trying the mirena again to see if they can do it, but she has now also said that injections or the implant may be an alternative. I am now very confused and not sure what to do!! I have had very bad experiences on the pill (I've tried quite a few), suffering bad depression and other symptoms, so I am really concerned this may happen with other forms of treatment too.

The mirena seems a very popular option but I'm not that sure about the other two options? I think the injection she is talking about is the Depo one, if so, I have seen posts on here about that. I'm not sure about the implant. She said the main aim is to stop my periods. I'm considering maybe trying the implant as it seems so much less invasive than the mirena but am fearful of side effects.

I would really value some feedback from anyone who has tried these, particularly the implant as I'm not sure if it's widely used for endo? Thank you to everyone out there in advance for any comments /thoughts/advice and also for this website, it really is an invaluable source of info and support x

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6 Replies
LittleMissManx profile image
LittleMissManxModerator

Hi Tinker

I had tried various types of the contraceptive pill before being referred to a gynaeologist at the start of my endo journey so when it came to discussing treatment options that was one less to consider! Like you are discovering after a diagnostic lap comes the hard bit of making a decision on a particular treatment that will agree with your body, be effective yet not too disruptive.

I decided to have the visible endo removed by excision surgery then I tried the Mirena coil to cope with the symptoms. Like you I havent had children and although it was a bit of a battle inserting the Mirrena I had it done by a wonderful lady GP. Sadly I have to say that the Mirena and I just did not get on despite my having an open mind about (I had also read lots of horror stories and also stories of ladies who were very happy with it). After 10 weeks it had to be removed after I was admitted to hospital as an emergency from the side-effects.

The only option remaining to me were the injections that put your body into a temporary menopause. I had left this option until last as I didnt like the sound of it or the effects on the body. I needn't have worried as I had fabulous results with prostap (there are other injections called zoladex and decapaptyl) and wished I had tried them first.

I wasnt offered the implant but maybe this was due to my bad reacton to the Mirena coil and its hormone content. Many endo ladies find different things work for them and sometimes the only way is to try and if it doesnt work for you then to move on to the next option.

If I can help any further pleaase ask!

Good luck with your decision :)

Caroline, x

persil profile image
persil

Hi Tinker

I had the Mirena coil fitted at the hosp just took a paracetamol first, no problems it was fine I have a child but had C section.its early days just 6 weeks ago apart from alittle discomfort for 2 days it seems fine and my bleeding is reduced. It hasn't helped yet with the bowel probs which I get with ovulation and again when my periods here. so going to the loo 4/5 times a day but I hope with every month that will improve.

So if you try the mirena don't worry the insertion is fine and vey quick if you get the right person fitting it.

Good Luck

Persil;

Impatient profile image
Impatient

Mirena is great once it gets going...BUT it doesn't stop cysts infact it can cause more cysts.

So just a warning for you.

I had a cyst burst in November, having been on Zoladex then mirena kicked in, so the cysts had definitely formed while I was on mirena.

I only have one ovary left, and it was cyst free in March when I was last scanned and Mirena had certainly got to work by then.

Personally the twinges from Mirena are much easier to put up with that the side effects of the hormone treatments which I wouldn't touch with a 10 foot barge pole ever again.

If you do decide to go down that route, then homework is the key, learn all you can about the expected side effects, and warn you family and friends too so they have some idea what you could be going through.

Women who have had the depo plus HRT too seem to report better coping with side effects than those who just have the straight depo implants.

tinker241 profile image
tinker241

i had the mirena and left me so ill for 6 months constant pain and stabbing pains and still bled.... so i have heard that people who have not got any children do not use Mirena and the best bet is the people who had children and it works on them which two of my friends have them and it fabulous to them but not the people i am hearing on here suffering badly but the depo injection is far better than being on the pill... i suffered a lot on the mini pills and the injection was the last straw for me and i had a various bleed but better than i was but i am still having bowel problems now... which is getting me down now... i was so ill yesterday after having stomach cramps and diarrhoea which left me very weak and tired... so i hope whatever you decide and make you feel comfortable and try one at a time which i did and you will know what is better for your body... hope you are painfree x

LeyaC profile image
LeyaC

Oh Tinker no! Don't have the implant!! I was told it was my only option and so I did it and thought it was going to be ok but I had terrible mood swings causing me to try hitting people when I was angry which is not my personality and even though it has calmed down now (I've had it in for 6 months now) I am always tired, I have pains in my arm so I think it may be hitting a nerve and I have been on my period for the last 2 months.

It doesn't stop periods and even when I had some tablets to stop my periods it only made them lighter. I don't think the implant works at all for endo and my doctor doesn't even know what she's doing so I don't know why I trusted her judgment, I guess I was desperate but I am going to ask to have it out but my doctor refuses as she says I need to give it a go first. 6 months should surely be enough but not in her eyes so I have to wait and see when I can and hope for the best.

I haven't tried any of the other things you mentioned and I don't really want to , to be honest. I have tried the combined pill but that did the same as the implant and I also found out that the oestrogen in it makes the endo grow, like giving flowers water it makes them bloom and blossom more.

That is why they say to have the implant because it causes a pretend pregnancy by feeding the body progesterone. This also caused me to put on 2 stone! I am still in pain and it hasn't worked so I am trying elsewhere now.

I hope something gets sorted for you soon!

Leya :)

tinker1234 profile image
tinker1234

Hi everyone

Thank you so much for all of your comments and I'm sorry that I haven't replied before now. I'm sorry to hear of the problems that some of you have had, but it's also good to hear some positive results too. I have spent the last week trying to sort all of this out, it's so confusing and difficult to know if what the docs are telling me can be relied on!

I spoke to the doctor who didn't sound too happy that I'd decided to try the mirena again, her response was, if it doesn't work this time then I'll get a prescription for the implant. She advised me to see the family planning clinic to see if they could get me in sooner than she can. So, after going over there for a drop in session to speak to them (they dont' make appts), they told me that they can't do anything as the doc has to refer me.... urrggh, here we go again!! Anyway, the FPC were really good and talked me through it all, they also said they wouldn't recommend the implant so after that and a bit more research I don't think I'll go down that route. I was wondering why I hadn't heard it being used much for treatment for endo, it doesn't sound like it is a good option.

t does worry me though that you get told all these different things by different people!!! It makes it really hard to know if you are doing the right thing.

So, as things are now, I'm going back to the docs in about 3 weeks time to try to have the mirena fitted again and if that doesn't work I'm going to get her to refer me to the family planning clinic. I should have just gone there in the first place!! I hope that it's worth all of this!! :-)

Anyway, I'm waffling now! I'm just glad that I finally have a bit of a plan in place. It does take it's toll doesn't it. I hope that you are all ok and thanks again for your comments ladies, it's really good to get some feedback on these issues that's for sure. xx

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