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Endometriosis UK
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Pill to mirena

So I finally went private and saw a fantastic consultant who told me my symptoms are 100% endo and some other symptoms I've been having also sound like endo, which had been a blessing to hear after 5 years being messed around by the NHS.

Only issue is now I'm back at square one, my life has been great since coming off hormones until the pains started creeping back in. She suggested the mirena but I'm very reluctant, has anyone else found that the pill (progesterone only or otherwise) and the mirena had the same effect as aren't they basically the same hormone?

I'm really reluctant to go back on any kind of hormones of any kind but I guess I just have to weigh up the options!

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Hi Kate, I had tried a number of different BC pills over the course of 6 years to help with my

Endo symptoms, but nothing worked all that well. My doctor back in the US (I’m from NY and just moved to London in January) had recommended the IUD. After thinking it over I finally went through with it and went with the mirena IUD. Not going to lie it was a little painful getting it put in, but after a few hours the pain started to wear off (horrible cramping). It did help my endo symptoms quite a bit but now after 2 years of being on the IUD my symptoms have come back worse than ever over the last 3 months which has led me to this forum. I’m not in a new country super confused about the health care system and feeling super alone!

That’s a long way of saying for me it helped quite a bit but it was not a forever fix. It brought my pain level from a 9 to a 3 for the last 2 years but now pain has been quickly rising back up so my luck may have run out! I don’t regret getting it given it gave me 2 years of sanity.

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Did you find it gave you the same side effects as the pill? I had a really bad time with mouth infections, hair loss, mood swings etc x

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I’ve been on pills that have given me really bad mood swings but I didn’t experience it with the IUD

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After trying a number of treatments (pills, zoladex etc) I had the mirena and it was the best thing I could have done. I know it’s not for everyone but it literally gave me my life back. Takes some time to settle but personally I recommend it.

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How long did it take for yours to settle? Mine has been in for almost 9 months now and I'm still spotting almost everyday :(

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About a year to finally settle but I didn’t have every day bleeding it was just random times. It. Sorry it’s not working as well for you. Hope your pain has improved.

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Yeah it's weird, I would bleed for 6 days, maybe stop for one, and then it comes again :( thank you, hope your pain has lessened as well!

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My whole first year on the Mirena was miserable- basically almost one long period (I only had a couple of days each month with no bleeding) but the last year has been really good and I’ve taken up a new sport (roller derby!). My periods are quite light now and with very little pain. After the first year of bleeding I was looking at hysterectomy but I feel pretty good on the Mirena now things have settled down. Good luck!

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I'm due to try the mirena. I was diagnosed 6 weeks ago via laparotomy. I have never had any knd of hormonal contraception/medication.

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I don't find it has the same symptoms as the pill, I think the method of delivery for the hormones affects the side effects. I got to the point where I couldn't tolerate the pill anymore after trying several different ones, my coil is still settling in and I have had some side effects but nowhere near as bad as I suffered with the pill

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Hey,

I’ve just been told that my symptoms are all Endo too - been in pain for 8 months and managed to get my gp to finally refer me privately and the consultant said straight away I could either have a lap or try hormones. I’m really gutted to be taking them too as I chose to stop taking anything a few years to for the day we decide to start trying for a baby. They’ve given me Cerzette - only day 3 of taking them. Xx

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This is the exact same boat as me! I was put on it when I was 17 because they said it sounded like endo, then did a lap 3 years later and found nothing so I chose to come off all hormones. I felt great, had like the best year of my life then got a UTI and a load of pain started up again. The doctor told me if we want kids, try now as there's minimal damage, and I don't see the point getting an IUD put in if we want kids in the next 2 years or so as my body is still recovering from the time spent on Cerazette!

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ok, please beaware, this is not to scare you, but just to help you,...if you ever go down the road of a mirena,

please ensure that you try it out for no more than 3 months, thats 90 days. No one know if a Mirena or Jaydess (a smaller more comfortable version generally) will suit them till they try it. You always have to give it a few days/weeks slack, but please don't keep giving it a change to hope it will start getting comfortable after 3 months....as you will exhaust yourself to pieces. My original 'gynecologist' wasn't the best and kept telling me to just keep trying it, hoping for it to settle in, and after about 8 months I demanded it out.

I understand the different stages you learn about endo, your at the stage of just being diagnosed....there is many more stages to come. Can i please fast forward you to some useful information that will save you going down the road of a ridiculous journey like some endo girls have...here is some resources: Website: drseckin.com/ (this dr is one of the worlds best gyn endo dr's from all his years of experience); Book: "The doctor will see you know", author Tamar Seckin, M.D; Another book: "Endometriosis & Pelvic pain" by Dr Susan Evans; website: healendo.com/ ; visuals website: endographics.org/english

hope you get on top of it.

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Thank you for the help! I was put on the pill 4 years ago to try and 'suppress it', then had a negative lap and chose to come off all hormones after exhausting myself trying different pills. The pain has recently come back which is why I'm looking, and was told by the doctor hormones are the best way forward, which is annoying!

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Hi. I had a full year of bleeding on the Mirena but I stuck with it because the pain was a lot less than before. After the year, it has settled down. I now have light periods and very little pain. My alternative was hysterectomy, so I’m very glad to have stuck with the Mirena, even though it was exhausting! I’ve got lots of energy and my periods are totally manageable now. Good luck with yours.

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First of all you can not formally be diagnosed with endo by a doctor assessing your symptoms. At this moment in time the only official diagnosis is via laparotomy.

I was diagnosed 2 years ago and up until my diagnosis I was put on the progesterone only pill to relieve symptoms of irregular and painful periods. As soon as I got the marina coil I went from having 2-3 week long periods to 3-4 day long periods and the pain is so much more manageable. This is due to the hormone being localised to one area and not moving around your blood stream like it does with the pill.

Hope this helps and hope you get sorted soon! X

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Thanks for the help! Yeah I was aware that diagnosis only comes from surgery, which I'd had after 3 years on the pill and was negative, but it was nice to be told by a doctor that she's certain it's endo, rather than the last 4 years of GPs fobbing me off telling me it's all anxiety and IBS! I'll have a think about the mirena but not sure in regards to having kids and things! x

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The marina is a localised hormone so it doesn’t travel around your body like having hormones in any pill meaning you won’t get the effects. Also once removed you are free to get pregnant straight away and you can get it without ever have being pregnant before. If you do have endo it also slows down the growth of it. Hope this helps x

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I was on the mini pill and switched to mirena 6 weeks ago. I felt bloated, had mood swings on the mini pill but have been ok since switching mirena coil. I don't want to jinx things but aside from spotting - which I hear is normal in the first weeks- I have been fine.

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You can only be 100% diagnosed if you have had a laparoscopy. They can assess your symptoms and guess you have endo but they can confirm it's that 100%. I take milinette combined pill for 3 months straight then a weeks break. It's worked wonders for me. Everyone's body is different. It can be trial and error to start with but hopefully you will find something that helps you x

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Thank you! I had a negative lap in 2017 but have had symptoms constantly since and chose to come off the pill as I'd been on 5 different types in 4 years and hated what it did to me! I don't really want to go on the mirena as I'd like to try for a baby within the next year or so so don't want that faff of having it put in and taken out so soon but at this point I'm getting desperate!

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I have been on both the merina for 10 months it was hell i had hip pain back pain i have never had before acne and terrible anxiety and deppresion x also my hair went very thin not to mention the irregular bleeding i asked to have it out and they then recomended the mini pill as i cant have the combined pill as i suffer from aura migranes. I took it for 3 weeks and my breast were full of huge painful lumps i suffer with tender breasts alot but nothing like when i started the mini pill so i went to get it check by the gp and she told me to stop taking it right away because of the lumps she told me to stop any treatment and to go back to her after 3 to 4 month so i did and she has no idea where to go......so i am now being referred back to gyne to see what else can be done i am sick to death of drs looking at me like im crazy when i explain my symptoms on these awful hormone treatments im not mad i know my own self and i am so much better off of them but at the same time i cant have my periods as the are so so heavy and limit daily life the whole thing is just really upsetting sometimes xx

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Hi Kate,

I am now post-menopause and had my mirena coil removed over a year ago. However, the mirena was the best thing I have ever done, with regard to pains and periods ... and just general lifestyle. I had bad periods all my life, which quickly got awful, so I was on the pill by my late teens (back in the late 70s). As my husband and I didn't want children, I was on it for most of my reproductive life. We had some time slots in our early marriage, when we relied on barrier methods, but my pains and ever-longer periods, always got too much. My husband also had a vasectomy, as we really didn't want children - but I still had to take a pill, as that was all that was on offer, then, for endo.

When I reached 50 I was made to stop the pill, completely. However, the pains then began to get worse and worse, so I eventually saw a leading Gynaecologist privately - turned out I did have high oestrogen. (I had been to an NHS gynae previously, and had a laparoscopy, but the relief only lasted a few months and then things were worse and worse with each period). The private gynae arranged for a mirena insertion on the NHS (under anaesthetic as I'd not had children and had a narrow cervix).

It was amazing! Over just 3 months, my periods got lighter and less painful, and after that I had no more pain or periods. I had the mirena removed some time after I turned 60, as hormone tests indicated my oestrogen had dropped, and was post-menopause, and I've been fine and pain-free ever since.

The mirena delivers a small amount of progesterone to the exact area where it is needed, and this counters excess the oestrogen and thus stops the build up of endo tissue, which gradually reduces. The amount of progesterone that the mirena releases, is much less than when taking the progesterone-only pill, and the hormone is delivered to exactly where it is needed, instead of a large amount of progesterone coursing through the entire body.

Mirenas don't work for everyone, but for me it was a lifesaver.

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Hi, I had the Mirena fitted a few weeks ago now and it has already reduced the amount of pain I’m experiencing . I too was reluctant because I haven’t always got on well with hormones! The Depo injection just messed with my head and I spotted all the time with the pill. I would advise you give it a go, particularly if you are experiencing pain on daily basis. I also used the Mirena before my second child was boon and it reduced my periods to almost nothing back then. I’m hoping that will happen this time too.

Hope that helps xxx

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Hi I have been on the nhs for 3 years struggling with treatment, finally had a mirena coil fitted about 4 weeks ago, best thing I ever did.

I was previously taking proveria tablets x3 a day, which I always forgot to take.

When ever my period came I would have really upset stomach struggle with hot flushes.

Since having the coil fitted my life seems so much better, I have had 2 children though so I am not planning anymore. I'd heard and read lots of horror stories but a couple of ladies at work said it was the best thing they did.

I think with endometriosis it's all about the hormones being unbalanced and you need the coil to help with this.

Hope this helps x

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Hi!

Like you I've had endo symptoms for years, since I started my periods at 15. I've been on hormonal BC since then, and the only thing to give me any relief for a while was the Depo Injection. I've been on that 4 years now, I still get every other symptom of Endo minus the periods. I had a Laparoscopy in March this year, done by a non specialist. No endo found. Like you I've since seen a private gynaecologist who specialises in endo and has said he's certain it's Endometriosis or Adenmyosis, my GP and him have told me to come off the Depo for 8 weeks (see how body reacts) and then GP will see me again and hopefully refer me to a better gynaecologist as I need a repeat Laparoscopy. The private gynaecologist was keen for me to go on the Mirena Coil. I've done loads of research into it but it just really isn't for me. Maybe at a later stage I will try it but right now I just don't like the sound of it. I guess you need to just research and look at your options. Good luck with everything and I hope you get some answers now! Xx

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Yes, thats the boat I'm in! The idea of the mirena makes me feel sick! And if it's an ordeal putting it in, I don't really fancy taking it out any sooner than necessary to try and start a family. I was hoping that pregnancy/childbirth would make some of the issues clear up, it's just a case of convincing the other half now haha x

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Haha you need to do what you feel is right and what suits your body at the end of the day. 😊 Good luck! X

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Hi Kate.

If you’re strongly considering the Mirena I beg you to read this first:

mystarvingartistlife.com/bl...

I had my mirena removed 8 weeks ago today and have experienced the ‘crash’ and I’m still in the throes of it. I’ve literally felt like I needed to be securely hospitalised on at least 3 occasions. I’m 29 in a couple of weeks and had to sleep in my mum’s bed for a week because the anxiety was so overwhelming. There are scores of women in America suing Bayer (who make the coil) because of what it’s done to them since having it removed. If I can prevent just one other person going through what I’ve been going through over the last few months (and what seems to take around 6 months to settle) that’s enough.

Ps sorry to be the doom and gloom here but I really feel strongly about it xxx

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Thanks for sharing, always good to hear someone else's views on it! I think I had something similar to this when I came off the pill as the pill was atrocious for my mental health and coming off it was constant panic attacks and feeling like a psycho!

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Hi I had the Mirena (jaydess) now for 6 months and making an appointment to take it out asap. The mood swings are uncontrollable, the bloating is like I am pregnant everyday (not just on my period), I have continued to have my periods without a miss and the pain is coming back with the passing of clots too so I am not improving at all , on the contrary gained a few extra side effects. I know it works for some people so nothing to lose in trying it out, it is not for me and cant wait to get rid off. I was on Yasmin many years ago and didn't have any of this issues.

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Hi,

Just seen your post, I'm interested to know what you decide. I'm in pretty much the same position as you and know how lost about what to do you're feeling. I don't know what to do either. I came off hormones and was fine for ages too. I'm debating trying the coil again as I've been as I've been put back on desogestrel for the last 6 months and it's not worked for me. My options now are either do nothing and stop pills or try the mireana again, I'm also reluctant about it as mine came out twice.

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Glad to hear it not just me! I felt great off the pill, and given I was told it want endo, I planned on being off it forever! Now being told I have to go back on something has really thrown me, and I really really don't want the mirena, especially for the reasons you state and the pain of putting it in with my tilted, too small womb and vagina and dodge pelvic floor!

I think we've decided to try for a child after the wedding and then re-evaluate after that! Fingers crossed for that! Good luck with whatever you decide x

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Yeah I have the left handed equivalent of the direction of my womb so I can kinda relate to that too and also don't know if that's why my body regected it before. It's fristrating because when I was single they were happy for me to manage without hormones, but now I'm with someone all they care about is contraception, that's the furthest thing from my mind right now. It would just be nice to not bleed every day and have a constant ache. Which I didn't have as often without pain.

Thanks. You too, hope things get easier for you.

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