Booked to get a Mirena fitted and am worried - any good news stories?!

[jennyd20]

Hi everyone,

I'm quite new to the endo world and have read so many horror stories that I wondered if any of you have had a positive experience of getting the Mirena fitted.

I first went to my GP about 14 months ago (I appreciate this is a quick timescale in the grand scheme of things!) with heavy/late/painful periods and intermenstrual bleeding. I had a few ultrasounds and eventually a gynae referral, and they found a cyst on my left ovary as well as endometrial signs in the muscle wall of the womb. For medical history reasons I'm not able to go on the pill. I was sent some information about the Mirena and in the meantime my endo symptoms got a LOT worse: sharp stabbing pelvic pain (usually on the left), lower back pain, discomfort relating to bladder and bowel, etc... I had a month where I was in pain every day no matter where I was on my cycle which was a new low for me. Anyway - given the recent decline, I am wondering whether the Mirena is worth a shot, but having heard other people's stories I'm pretty worried that it's going to make things even worse.

Has anyone found it to be helpful?

To be honest, I don't really *want* it fitted - I just don't like the thought of it - but I don't really have any other options. Other contraceptive routes aren't suitable for me for various reasons, and my doctor reckoned the risks of a laparoscopy aren't worth it for my current severity - and if the past couple of months are an indicator of how endo is going to be from now on, leaving it completely untreated doesn't seem sustainable either.

Would be really grateful to hear how you've got on with it, especially if you've had similar situation/matching symptoms etc.

Love and thanks

Jenny

[AlessV]

Hi Jenny,

I'm fairly new to this world myself, but I am on Mirena right now. I have deep endometriosis, affecting my ovaries, uterus and uterosacral ligaments, but I actually had Mirena fitted before the diagnosis.

It helps a lot if you have a heavy flow and, after the initial discomfort, I had no symptoms for about 8 months. I started getting some pain back after that, but I am on my 3 year of Mirena now, and overall it has been a really positive experience for me. Only in the last year some symptoms started to come back, but I still think about those first months and it was amazing.

I hope this helps, even if a little bit

Best of luck with everything,

Ale

[Tangerine1990]

Hi - If you've been using the search bar you might have found some of my posts involving the Jaydess coil. I had a terrible time however I would still suggest trying it to see if it helps your symptoms. There is no evidence that hormonal treatment can help the disease itself or stop it progressing, but hormonal treatment can reduce pain and symptoms. My life would have been a lot easier had I known this, because I carried on for too long (10 months) with a coil that wouldn't settle down thinking it could somehow help the endometriosis. Most doctors know nothing about this and are under the impression that birth control can save your fertility, which is a myth. So, I'd say give it a go but be ready to remove it after 3 months if its causing any issues that don't improve. I'd also say if you get it, be prepared to spend 1 or 2 days not feeling great. You should arrange comfortable travel home, do NOT walk home from coil insertion. If possible, ask for some serious pain relief from your GP before you go for the fitting. My GP was understanding and gave me a couple of valium tablets (muscle relaxant) which stopped me having any horrid contractions after the insertion. Other people find it doesn't cause them pain at all though, the only way to know is to try. Excision surgery is the gold standard of care for endometriosis, and you can learn more about it on Nancy's Nook.

[Angellouise]

Hi Jenny, my -9 year old daughter has merena , she has endometriosis symptoms but it has not been found. Merena helped with the heavy bleeding for one month but now is bleeding everyday not real heavy though. Her pain is real bad , it hasn’t changed with the Merena and now her Doctor wants to take it out and try three different birth control pills. I hope you find the right thing that works for you. Good luck

[C_rin_G]

Hey, I’ve had the mirena coil in for 2 years now first year was amazing no pain whatsoever then this time last year o had to go to hospital COs of the pain and my endo symptoms have got a lot worse. I’m in constant pain everyday all I can I say is everybody reacts different, for some people it helps and others it never works, I’d try it for a few months and if your having problems with it then get it removed. Hope you get sorted

[Luci20]

Hi I have been advised by an endometriosis specialist to get the coil fitted to prevent my endo returning after this was removed during laparoscopy. I feel the same as you as I am really not keen on the idea but cannot tolerate contraceptive pills. You should try to see a endo specialist and not listen to what your GP has said regarding having a laparoscopy. I was fobbed off for 13 years by my GP and general gynaecology. They seem to say anything to try to put women off having a laparoscopy because it is more costly. It was only when I paid privately to see an endo specialist that a laparoscopy was recommended straight away and this was done back on the NHS. You can find out if you have any specialists near you by checking for BSGE approved endometriosis specialists centres.

[hilkora]

Hi, I had Mirena fitted at the time of my second excision surgery almost 3 years ago so can't comment on the insertion process. I had to have it taken out after 3 months as I had severe vaginal dryness to the point of it being painful to walk and my hair was falling out. It did help with endo pain but I couldn't cope with the side effects. I then tried 6 different types of the pill, both pop and combination but I just end up a tearful mess and depressed. I'm now trying out an evra contraceptive patch, it's only week 3 so still early days but endo pain is less. If patch fails I will try the Jaydess coil. It's similar to Mirena but has less hormones and only lasts for around 3 years.

Regarding my 2 excision surgeries - before these surgeries I had endo pain only whilst on my period so one week per month. After surgeries I was in pain daily. I had stage 4 with bowel involvement. Endo was shaved off my bowel and I had an infection after second op, now I have to be careful and avoid dairy, caffeine, alcohol, processed foods and in general eating large portions as I end up in pain the morning after. I also think my nerves were damaged as every time I get stressed I have pains in my pelvis, like slicing with a knife pains. Now I wish I never had the surgeries and just tried out the different contraceptive options.

Hope Mirena agrees with you x x