Coil - yes or no?

[Matt_amber]

Hi ladies, for years i have been told to have the coil as it will help with the Endo to reduce growth. However, i can only have the non hormonal one as i tend to go a little bit crazy when hormones are pumped into me. I keep getting put onto a whole array of pills with different hormonal levels in them as they keep stop working for me. Does anyone have the non - hormonal coil? Do they find it helps? does it hurt? do you bleed? Any info from anyone would be really helpful xx

[luthien]

I haven't had any coil fitted so can't comment from an experience side.

Scientifically the standard coil as you've said contains no hormones, all it does is create an environment where sperm and fertilised eggs cannot survive by chemically altering the mucus. It doesn't create or change hormone levels therefore would have no effect on endometriosis.

Like anything put into your body; physical / hormonal / chemical it can take the body a while to get used to it. The non hormonal coil will not interfere with normal cycles therefore all symptoms / heaviness / irregularity will stay the same.

A local anaesthetic is applied to the cervix and the coil is inserted through there, the same way as the hormonal one. You can have the hormonal one inserted as part of the laparoscopy to remove endo / diagnostic lap as you're not awake - but as you say you don't suit hormones it probably wouldn't be good to have something that's difficult to take out - requires a doctors appointment / outpatients.

I know it doesn't help much, but hope there's some info that may be useful.

I've had excision of endo and am not going to go on hormones; I want to see what's normal for me rather than have the side effects of pills / tablets - they don't suit me either.

[Matt_amber in reply to luthien]

thank you! thats helped me understand a lot more! they keep telling me to have it because i will have less periods so less growth but they seem so relaxed about it! i am on microgynon at the moment and seems to be okay but just wondering if there is something better for me. would love not to have any hormones in me! i guess i should just stick with it

[luthien in reply to Matt_amber]

I was on microgynon for about 10 years - I didn't know I had endo and the docs didn't seem fussed. It wasn't until it stopped working as in the symtoms got worse that I really pushed to find what's going on. I had so many health problems with hormones during that time -which I thought were just normal - so I wouldn't go back.

Have you had a lap and had your endo excised? That will definitely help reduce regrowth as it removes the endo letting you have your life back for a bit and see what you can manage.

Just remember endo requires oestrogen to grow and in large enough adhesions it can create it's own oestrogen so making itself worse. All mammals including males produce oestrogen so any hormones cannot stop that, therefore endo will always regrow, it's just horrible Regrowth amounts vary and so do times for symtoms to come back so it's not always straightforward. Some women have a lot of endo and very few symptoms, some have a bit of endo and lots of symptoms so it's not always easy to track growth.

Hormones cannot reduce the amount of endo so it will either stay the same or regrow slower - eventually it'll require surgery but that could be more invasive and serious the longer it's left as endo can perforate organs.

Have a read of my experience it may help. You can get to it by clicking on my profile or searching the page for:

"All this effort does pay off - my story - hope it helps !"

xx

[Matt_amber in reply to luthien]

I was on microgynon from 15 years old and then did the implant in my arm (worst mistake of my life). i stayed on microgynon until i had my lap when i was 21 years old in 2015. they then tried Celeste which made me still a bit crazy, then put me onto Yasmin which i have had to come off because it wasn't working anymore, and have now been back on microgynon since September. mood seems okay but pain is bad. he told me in September i need another lap which i will probably do next summer!

All this information is not told to you when you seek the help and this is the problem! Microgynon is higher in oestrogen if i am correct in thinking that? so surely that is worse for Endo growth?

I will look at your story now thank you so much! xx

[luthien in reply to Matt_amber]

wow that's a lot of hormones over the years. poor you

Yeah we're not told stuff like side effects etc and you feel pressured to just take the hormones when you're younger until you research then think ... hang on...this isn't right....

I'm not sure about tablet hormone levels, I think you can look them up if you google them like on the NHS website or similar.

[Sabre84]

Hello.

I am long-term diagnosed Endo and PCOS sufferer and also have issues with hormones making me a little crazy!! I haven’t ever got pregnant/tried to get pregnant.

I was reluctant for so long to have the mirena as I was worried about the hormones, but after exhausting all other options I finally gave in. I can honestly say it was the best decision I ever made. I’m now on my second and have had no periods for 4/5 years on the first one, and no periods at all with the second one. The hormone is localised so not anywhere near at the same levels as when taking oral contraception.

However, I have lots of friends who have had the non-hormone coil who have said it has made their periods ten times worse. I personally would never have that one as my periods were horrendous prior to having the mirena.

Re pain, I won’t lie, the first one hurt like hell going in and I had severe cramps for a month or two BUT I now realise after having a competent doctor inserting the second one, that the first doctors (there was two) one must have been in training. I would never have a doctor-in-training inserting a coil again as I get myself all worked up in these kinds of situations at the best of times. The second time was done and dusted in less than 10mins , the first one took at least 30mins.

In any case, for me the pain was worth it for the lack of periods.

I’ve also realised that I probably am a tad crazy anyway, and have sought help in dealing with my emotions as a result of realising this!! Hope this helps. Defo do your research re the copper or non-hormonal coil.

[Chloes161290]

Hey, I had the mirena coil fitted in February and the first month I did spot a bit. Pills never worked for me, and the rod in my arm made me crazy lol. The coil settled down it was a little uncomfortable to fit but after a couple to days I was fine. It’s worked well for me no periods (which is amazing) however I’m finding signs of endo are happening again now as I’m getting re-accruing UTIs so wouldn’t say it slows it down that much to be honest, good luck x