Looking for advice on mirena removal

[Emld]

Hi there,

I’m hoping somebody in this group can give me a little advice because I’m struggling with some decision making. I was diagnosed with endometriosis after a laparoscopy and ablation at 23 after becoming very ill for a year and a half, it really destroyed my life! They insteted a mirena during surgery and it’s been a lifesaver but since then I’ve suffered with weak bones and painful, very swollen joints which I’m convinced are related to having no periods since I was 19 (obviously partly related to the coil but I’m now 28 and have gone through another surgery and coil). I’m at a point now where me and my partner would like to try for children next year and I’m aware I should take the coil out soon to give my body time to repair but I’m terrified that the symptoms that the mirana has helped to reduce will come back aggressively. Does anyone have experience with this who could give me some advice or expectations. Sorry for the long post but you all know that it’s always a long story with endo!! Em x

[eew_notts]

Hey there,

I was on all kinds of hormonal ‘interventions’ from 15 - 24 years old to try and manage my horrible periods and then, following my official endometriosis diagnosis and treatment in March 2015 at age 23, to try and manage the Endo. I stopped all hormonal treatment at 24 because I felt bloody awful and wanted it all to just go away. My horrible periods and cyclical pain symptoms came back but didn’t seem quite as bad at first (probably because the Endo had been kept at a minimal) and I gave acupuncture a go to see if that would do anything to help. I didn’t have much hope and I’m generally not into complimentary therapies but it worked wonders for me so that may be worth a go; it can be very helpful with fertility apparently too. I would suggest you speak to your doctor about your joint pain and achiness; it can be a symptom of a vitamin D deficiency, which is a common side effect when the natural female endocrine system has been repressed with various hormonal treatments.

I am now 27 and following my second laparoscopy 3 weeks ago, am potentially going to have to go either on zoladex or depo provera to manage my Endo. I had a large cyst and many lesions removed in my most recent surgery and my husband and I are not ready to have children, so realistically going back on some kind of hormonal intervention is the only option to keep the Endo at bay... But I’m scared because I felt so crap whilst on various pills/ implants/ coils etc. So we seem to have exactly opposite problems!!

Obviously, not being on hormonal treatments has meant my Endo came back. But the only way to get pregnant is to stop the hormonal treatments obviously (mirena coil in your case), so I would spend some time preparing yourself to build your immune system and general health (look into supplements, a good balanced diet etc) and then go for it! Of course if you have any major concerns then it’s always best to speak to your GP/ gynaecologist.

Best of luck!

Xxx

[JulesUK]

Not advice as such though just to say I can understand where you coming from endo had a massive impact on my life before I had the mirena and I too would be very apprehensive to be without it. I was wondering if you could have a check to see your bone density/check for risk of osteoporosis ? I’m sure they would refer you given that your hormone levels have been altered with the treatment. It’s my understanding that when pregnant and breast feeding the endo does not grow. I know it’s scary but you could be fortunate and become pregnant before any endo returns. Unfortunately endo is so unpredictable there’s no way of being 100% of what the outcome will be some people don’t have any symptoms after stopping treatments, some comes back quickly. Sorry can’t be more help but wanted to wish you the best with whatever you decide.

[Jojo2088]

I feel EXACTLY the same! I dont want kids yet but I do in the future and I'm terrified of having the coil removed. I remember those bad periods and it's so scary not being able to control it!

I did ask about conceiving at my last consultant appointment, just so I knew where i stood. I was told that as I've had excision surgery and the coil inserted hopefully that keeps the endo at bay in the meantime but it means that my body is in prime condition for conceiving as theres no endo about. Ideally us ladies want to get pregnant as quick as possible so the endo doesn't get bad and if I haven't conceived after 6 months of trying then to get referred to a BGCE centre as they have 'assisted conceiving' units. You might have to fight for the referral as usually you have to wait a year I think but I was told it's in the NICE guidelines for endo ladies.

Hope that's sort of helpful!

[jessicareay93]

I had the exact same concerns. I had my coil fitted when I was 20 during my lap. It was my little miracle! Five years later times up! Me and my partner decided that rather than replace we’d try for a baby. That was in January. I started using Flo (period/ovulation tracker) as soon as it was removed. When it was first removed I did bleed for 5 days (26th-29th January) after that I had my first proper period in 5 years starting on Feb 6th. Since then up until this month (late by four days, fingers crossed it’s a baby!) my body has followed flos period predictions to within 1/2days. I do also use ovulation kits every month. I have found that I ovulate later than the app suggests so I’d recommend using ovulation tests. I was terrified that the horrendous pain was going to come back, I’m not sure if I’m lucky or had a very good surgeon but I’ve not even had to take a paracetamol as of yet! Obviously I’m avoiding all medications anyway. I hope my personal story gives you a bit of hope! For me the idea of being without my coil was far worse than the reality, so far! We have been tracking my body quite intensely to maximum opportunity but also to ensure I’m (hopefully) pregnant ASAP, selfishly to avoid any of my horrendous past pain reoccurring.