A place for endometriosis survivors & supporters, and all that goes with it.

Mirena: The Final Frontier

34 Comments

I’ve been on Microgestin Fe for the last 6 months. While it never really made me sick to my stomach, it did manage to make me gain weight (always pleasant, since I also have PCOS), have daily headaches since Day 1, feel puffy and put me through a few days of severe depression every few weeks. Also, my cycle never once synchronized with my placebo week, despite taking the edge off my daily pelvic pain. I wanted to give it a good chance, and I did, but about 2 weeks ago I decided enough was enough.

I finally went to my PCOS doctor, and as I sat in his waiting room, I thought to myself in a chipper way, “OK, this one didn’t work, but I bet the next one will be more helpful.” Then SMACK — I realized there are no more choices, except the ones I don’t want: IUD, Botox and surgery/hysterectomy. After he rattled off a list of new BC to try and I knocked them all back since I’d already tried it — from LoEstrin and Yasmin to Depo Provera and the dreaded Depo Lupron. I was fairly distraught.

So now, finally, my date with the Mirena IUD is approaching — this Friday, August 21 to be exact.

When I was a clinic practitioner, I so believed in my patients’ success stories that I had an IUD lapel pin the exact size of an IUD (which is remarkably small) and was happy to give out tons of info on the different options for women seeking long-term birth control. The Mirena is a flexible IUD that is non-surgically placed into the uterus in an outpatient visit and remains effective for up to 5 years. The difference between Paragard and Mirena is that Mirena also holds a progestogen that gets delivered right to your reproductive system — basically like a perpetual mini-pill for your uterus, so less or none of the yucko side effects that come from an orally-ingested pill.

So what’s my freaking problem?

Short answer: I don’t know.

Despite the rave reviews from former patients as well as friends who have similar conditions, I am having the same panicky feeling that I did before starting Depo Lupron, which was one of the most miserable medical experiences I’ve had. I discussed this with my OB/GYN’s nurse, who also has endo AND Mirena and feels great, and she made me feel pretty good at the time. Now I’m back to — let’s face it — scared.

The rare side effects and possible complications that are freaking me out, in no particular order:

* BLEEDING. You can spot or bleed daily for 3 months or so while adjusting to the hormones and IUD. And that’s just going to piss me right off.
* NOT BEING ABLE TO PLACE IT. Often times your cervix must be manually dilated — very slightly, but still dilated — in order to place the IUD. I’ve only seen one time where the patient couldn’t dilate enough to have it inserted, but still.
* NOT WORKING AT ALL. Pretty self-explanatory.
* EMBEDDING IN THE UTERINE WALL/UTERINE RUPTURE. These are insanely, mind-bogglingly rare possibilities from IUD placement, but if it can happen to me, it often does.
* UTERINE PAIN & GENERAL FEAR. I can’t put it more simply than that.

POSITIVES include wide-spread reports of good experiences of relief with Mirena from others in my situation, the probability that I’ll stop having a period at all on Mirena (and I’m buying everyone cigars and champagne if that happens), it lasts 5 years (if I want it that long), no daily pill to lose or forget, simple to take out if I don’t like it, and it’s way better than my remaining options. The likelihood of success far outweighs the possibility of failure with Mirena.

So that’s that, for the most part. General anger at having to go through ANOTHER BC method and fuck around with my body are on the list too, and it’s less scary for me to focus on being mad about it that to be upset about it. Then again, this is quite literally the very last option for me before they’ll really insist on injecting Botox into my pelvic muscles (which they’re already trying to get me to do and I don’t want to do) and surgery and/or hysterectomy (which I REALLY don’t want to do). I’ve literally tried every other level of hormonal birth control to no avail.

So everyone … what do you think? Am I just being totally nutty? What are your experiences with IUDs, Mirena or Paragard? Inquiring minds want to know!

FMI, if you need it:
Mirena: http://www.mirena-us.com/
Mirena and endometriosis: http://www.endometriosis.org/mirena.html
PCOS: http://www.womenshealth.gov/faq/polycystic-ovary-syndrome.cfm

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Author: endosucks

Endometriosis sucks. I'm here to help. on.fb.me/endosucks twitter.com/endosucks endosucks.wordpress.com

34 thoughts on “Mirena: The Final Frontier

  1. I hear you on going through all the options. I was diagnosed with endo 10 years ago when I was 16, and since then I’ve been on so many different b/c pills, the ring, patch…and done Lupron(never again), I hope that Mirena does well for you. Keep us up to date with what you expirience. It’s great that you have the ability to put your story out there. Thanks!

  2. finishing up lupron and having and IUD inserted tomorrow. so nervous about it. i hear it can be painful going in…which i am totally anticipating. taking some pain meds before i go ;) ill let you know how it goes.

  3. I got the Mirena a month ago, and the insertion was pretty painful (but worth it for 5 years of worry free birth control!). I had some minor bloating and cramps for the first few weeks. Also, spotted every day for three weeks. But that’s all gone now – and I feel great! I am really sensitive to hormones too, can’t do any oral HBC, and for the first two weeks after the Mirena insert I felt really PMS-ish and emotional. Also all gone now. From what I understand, it can take 6 months for your body to really adjust so I am kind of just expecting anything and won’t freak out too much. Have to give my body time to get used to a foreign object being in there. A great resource for IUD info is the IUD_Divas livejournal group. Lots of info on there. Good luck!

  4. I had an IUD put in and they used local anesthesia and it went great. It was bizarre getting a shot down there but it felt like a pinch and then I didn’t really feel anything but a general sense of discomfort. I loved having an IUD but I got the copper one instead of the mirena which was I think a mistake. I was trying to go the more natural route and it didn’t help my endometriosis much. I think I probably would have had better results with the mirena. Good luck!

  5. ok. i had the IUD inserted yesterday. it was not the most comfortable process. mainly the dilating they do to the cervix with these metal rod things. it feels like a bad menstrual cramp when they do that. the actual insertion of the IUD can hurt a bit but its quick. i had slight cramping and bleeding afterwards. so im popping the pills today. please be sure to take some pain meds at least an hour before you go!

  6. hope everything went ok.

  7. Ladies, you are freaking awesome. Thank you for posting and all your positive thoughts! Hope you are all well and will check back for my detailed journey with my Mirena so far. Hint: After two post-insertion visits, my doctor and I agree that this damn thing might be coming out quite soon.

  8. Just a heads up – I’ve had the Mirena for 2 years for endometriosis. My new gyno says the Mirena works swell for stopping the period but not so much for the growth of endomtrial implants. New ones can grow and the Mirena isn’t going to do much to stop it. I just had a lap last October and I’m already having pain! Doing Zoloft now and I HATE IT!!! This is for pain (I don’t get it!) New doctor, what does she know?!?! My only options left are Lupron or hysterectomy. SCARED! What was your Lupron experience?

    • How’s your Mirena experience? Mine has been pretty lousy, although it has only been 6 weeks.

      Zoloft is for depression, and they’re giving it to you for pain?? Do you mean Cymbalta (an antidepressant meant to also relieve minor pain) or Zoladex (an injection used for cancer and sometimes endo treatment)?

      My Lupron experience was horrendous and most doctors describe it as “horrible” and “sadistic” (their words and I agree)! In a small dose it can be used as a hyperovulation fertility drug. But it quickly works to shut your hormones down and cause temporary menopause in its full and fiery glory. In one month, I gained over 40 lbs, and being 20 years old and a junior in college at the time, I just *loved* the night sweats, irritability, vaginal dryness and leaving class due to hot flashes. Plus, I never stopped having painful, irregular cycles. So there’s that.

      I have heard a few people say it helps them, so I guess anything is worth a shot (hey, a pun), but I would never do it again. But there’s more you can do: try acupuncture, physical therapy and biofeedback.

      Bottom line: If it feels wrong, don’t do it. I should have listened to my gut and never done Lupron. Find another opinion if your doctor won’t do another lap; it’s been a year. If you don’t want a hysterectomy, DON’T GET IT!

      It’s stressful, but you’re not alone. Thank you for reading and I hope you’ll keep contributing. xox

      • Oh My Goodness I can RELATE! I was diagnosed with endo July “08 and immediatly went from BC Yasmin to Depo Provera. I did horrible on Depo. Weight gain, mood swings, cramping, pain, bleeding, hot flashes, and pretty much anything else that could happen did. I had lap a year ago, Nov. “08. I had the Mirena inserted in beg. of March ’09. When I got it it hurt so bad and for the next 4 days I had cramping so badly it felt like I was having contractions. I had my daughter in Oct ’05. I have been on the Mirena now for 8 months. The first 3-4 months I had spotting everyday, cramps were not as bed but still everyday and weight gain. After about 5 months on Mirena I stopped having periods and any spotting, my pain got better, it wasnt everyday anymore. just 4or 5 days out of the week instead of 7. That was great and a huge relief. I wasnt taking 800mg Ibuprofen 3 times a day anymore. although I had hot flashes horribly, very often, mood swings, depression, and felt like I was going through a false Menopause. Im sure it is nothing compared to being put on Lupron. That whole idea scares me to death. could it get much worse? Yes it can! Its Nov 22 and I am in my 8th month of the Mirena. about two months ago my pain started back as being everyday again. I started spotting light brown. a few weeks after that things got proggresively worse very fast. I was getting severe cramping and back pain+ shooting pains down my legs. I went to the OBGYN and they did an Ultrasound that concluded no cysts, Mirena was in the proper place, nothing looked or apparently was wrong. An on call Gyno said to me “Everything looks normal, I dont know what could be causing you this much pain.” I thought I was going to loose it with that docter. I got a list of physical therapists for pelvic physical therapy. Today I woke up with severe cramping (once again), back pain, and the pains in my legs. I was bleeding quite heavily and its bright red blood now. How can you stop having periods and then start having them again less than 2 months after you stop having periods on the Mirena???? I thought if and when your period stops, it stops and doesnt just come back again. I am really starting to go crazy here. I dont know what to do anymore. Like many other women I was very young (I thought) to be diagnosed with endo, 22 yrs and my Gyno says there are not any options left if the Mirena doesnt do well. Lupron or hysterectomy! Im only 24 and I have a 4 yr old daughter. I want to have more children one day when my life seems to be more in order and when I am married. I feel hopeless, like so many other women out there and im going to get a 2nd opinion on other options, now that Mirena is not working/miserable for me. I appreciate all you other women who have posted your stories and experiences. It has helped me learn so much and feel like im not so alone in this physical and emotional battle with endo and Hormone treatments. If it wasnt for yall I would probably be going much more crazy right now than I am. Im wondering if more Lap may help? Of coarse im not wanting surgery, but at this point I dont know much else other than Lupron or hysterectomy. Anyone have any advice to give, I would appreciate it. Good luck to all of you women out there struggling to feel halfway normal and stop hurting. Also if anyone else knows of good sites or chats about endo and hormone treatments please feel free to share.Thank You.

  9. OMG !!! I just started my second round of the lupron … I had a Lap. done in 03 and did a my first round of lupron then… at only 18 it was horrible and I was told I may never have childern they couldnt remove anything due to where the implaint were (Liver, and other organs) I think the hot flashes were the worse for me at that age and the mood swings were horrible also.. But I have tried everything to try to but this at bay. I had a child in 05 and then after a while on b/c pills I was stilling hurting that the Doc told me about the mirena although the mild discomfort at first, it stopped my periods for a year and nothing and now ITS BACK so now my new OB started me on the Lupron AGAIN … not looking forward to this again but I do want another child …..

  10. Im also 18 and been on all birth control methods for my endo and mirena was my last option. i got it inserted in dec 09 and it worked amazingly! its now febuary and it sitting here typing this and dealing with horrible endo/period cramps(my period’s not even here) i know it can take 6-9 months to work but im not sure why i went painfree from december to january but now this? im really looking into getting a hysterectomy so i can quit dealing with this b/c i cant take this pain any longer. 8 years is too long!!!! cant deal with it anymore. have an appointment with my ob/gyn on march 12th to discuss this

  11. Just wanted to add a positive note here. I’ve had endometriosis for many years. My periods had got so bad that I had to go get a shot of Pethidine from my doctor when a period came on. It was the only painkiller that worked! About 10 years ago I had my first Mirena fitted, which lasted for about 5 years. I replaced it with another, for another 5 years. In the past year I’ve had it removed, and because I tended to get thrush (from having an IUD), I decided to leave it out and see what happened. I’ve just had an extremely painful period and the pain has not stopped – pain when tummy is full, pain urinating, you all know the drill. So I will be going back to my doctor this week to get another Mirena fitted. I honestly can’t wait!

    So if you are considering a Mirena, do give it a go. It’s better to have hormones delivered to your uterus than to your whole body. Give it 6 months, unless you have severe symptoms. You can’t expect your body to immediately get used to a foreign object emitting hormones. Our bodies have an amazing ability to adapt, though, if given time. All the best!

  12. HI THERE I HEAR YOUR FUSTRATION IVE HAD THE THE MIRINA IN FOR 1 YEAR THE FIRST 6 MONTHS WERE GREAT THE I SUFFRED WITH HEADACHES STOMACH PAIN MY PERIOD WAS FOR 2 WEEKS THEN IT STOPPED FOR A FEW DAYS THEN IT STARTED AGAIN FOR A WEEK AND SO ON ITS A NONSTOP BATTLE NOW IM STUCK WHAT IS A PERSON SUPPOSED TO DO A HESTORECTOMY IS THE LAST OPPTION AND I DONT WANT THAT IVE HAD MY TUBES TIED TWICE ALREADY AND BEEN ON THE PILL NOTHING SEEMS TO WORK SO WHAT DOES A PERSON DO DOES ANY BODY HAVE ADVICE FOR ME OUT THERE CAUSE THE GYNOCOLIGISTS DONT KNOW WHAT TO DO ANY MORE THEY JUST WANT TO DO A HESTORECTOMY ITS THE LATEST EVERY 2 OR 3 WOMANS HAVING IT NOW BERNISE

  13. I have been suffering from endo too!
    I have been on bc and prosgesterone only pills. I get migraines with auras but I went on birthcontrol anyway. BC did not help with Migraines made them worse. i just had lap May 10′ and the pain was back full force just 2mos after surgery. I think it was the depo provera shot that I had in April that kept the pain away after surgery. Not the surgery. On Depo Provera I had weight gain and irritablility really bad. I have been on bc for 2.5 months, now I am going to try Mirena. Very nervous too.If Mirena does not work then I guess back to depo provera.
    Why isn’t this easier?? So much suffering. I am 35 but I want a hysterectomy just to make it all go away. There seems to be no end and no relief.

  14. well ladies,
    im 22 and i got diagnosed with endo 9 years ago. since the i have been on that many pill and injections and other drugs to help with the pain and bleeding. nothing so i decided to go to different doctor who recomended that i get the marina put in. i got it in at the same time as having a lap done so i didnt feel any thing. but i had bleeding for about 6 months and i have pains flushes and all the syntoms on the info sheet i pretty much got. so i have had it is for about 4 years now and i have had 3 laps done in that time and they have found less and less endo. but for some reason im still getting really bad pain. i have been in and out of the public system for 3 years and the still cant tell me y. they thought it fell out. (as if i wouldnt notice that) they thought it had moved, that is was just period pain, they thought i was making it up. i have decided to get the marina out on the last lap but the doc recomended that i didnt and it wasnt wat was causing me the pain but funny that 2 months after pain still here. so i have had enough. i went to the doc to get it removed and they cant find it. not the first time this has happened. i went to 3 diff docs and they all said the same thing so i went to one of the head endo ppl in australia who happens to be down the road and he said that endo can get into the organs and into muscle and you cant always see it in laps. so he said since i now have to go under to get the marina out he may aswell do a really good lap done at same time. i just was it to be over and i just want to be a normal person. i want children but i am worried that me time is just about up…….

  15. I’ve been having symptoms from endo since I was 12, but not diagnosed until I was 16. After the laparoscopy, in which my right ovary was removed because of a burst chocolate cyst, I didn’t really improve, even with medication. Then at age 18 I found why I hadn’t been improving, I also have celaic’s disease. So after I adjusted my diet I was pretty much pain free without medication, except during my periods. However, at age 22 the pain began getting so bad I had to go back on the pill. It took several months to adjust, after side effects that were almost as bad as the pain itself. I was put on continuous dosage, with a break every 3-4 months. Everything seemed like it was going fine. The this last November, at age 24, the pain became severe, even without being on my period. I couldn’t function. It took 2 months to convince my doctor that it wasn’t pain from the celiac’s, and that I didn’t need narcotics. So in the beginning of January I went in for a laparoscopy. Stage II endo, thankfully none of my organs were affected, there were just a lot of deep lesions. But what to do next?
    All of the treatment options seemed pretty bad, and because of the celiac’s there are only 2 birth control pills I can even take, and temporary menopause doesn’t seem like fun. So 2 weeks ago I got the mirena, two weeks after surgery. Getting it in was horrible. Of all the accounts I’ve read none were like mine. The cramps showed up immediately, so badly that I was nauseous and my bowels completely emptied themselves. I could hardly move and had to lie down for an hour before I could leave the doctors office. Since then I’ve been spotting with blood colours ranging from bright red to muddy blackish brown. The cramps come and go in varying degrees. Sometimes enough to make me vomit, other times enough to make my bowels empty. I’ve also been very dizzy and had a loss of appetite. I’ve lost 7 pounds since I got mirena in. I’m hardly able to function normally. It feels like I’m right back where I was before the surgery. I’m really wondering if another possible 2-3 months of being pretty much bedridden is going to be worth the possible long term relief.

  16. I just had a laproscopy yesterday as i had terrible burning, stabbing pelvic and back pain constantly. Ofcourse they found extensive endo! My doctor inserted the Mirena and now im just hoping like hell that it stops the endo from growing back. The pain was so bad i didnt want to live anymore. I really envy the women out there that dont suffer from this horrible disease.

  17. Ugh, I did Microgestin, the Depo, and a ton of bc pills until I agreed to have the Mirena put in. The pain from it being put in, the next two weeks of horrible cramping, and the weird feelings I get all the time now if I move the wrong way are almost not worth the lighter periods. :( My body has rejected everything. I hate this part of womanhood.

  18. Hey ladies, I’ve just read all of your entries and my heart goes out to all of you. Endo is rough! This is my experience with endo and mirena. I am 34 years old. No kids. Periods started to get painful around 25. Just took lots of Naprogesic or Ponstan (Australia) I could cope as long as I had lots of drugs. Once I turned 30, I started to get really depressed around 1 to 2 weeks before my period. I went to the doctor and was put on mild anti-depressants for 2 weeks on, 2 weeks off. I felt a bit better but it certainly wasn’t helping my period pain which was getting worse and my periods were really heavy. I was taking so much time off work and it really started to worry me. So I got a referral to see a fantastic Gyno. She booked me in for a lap and I’d decided that I would have the Mirena inserted while I was under anesthetic. (Great idea to have a pain free insertion) So they found out that I had endo and a few cysts. I had a curette done to help clear out some of the lining in my uterus as it was really really thick. Anyway, so I’ve had the Mirena in for nearly a year. The first few weeks were a bit uncomfortable. I went back to the gyno a couple of times as I was feeling pretty lousy. She just gave me some antibiotics and said I must have had a bit of an infection from surgery (lap) and I was ok after that. I think Mirena is pretty good. It certainly has a few down sides…. a little weight gain but that’s easy to deal with. I think it’s helped with my depression which is a upside. My periods are also so light now…… I changed from using massive super tampons with a pad for backup and now I use mini tampons and sometimes I can get away with just using a panty liner on it’s own. but to be honest, I’m going to have it removed for 1 reason and 1 reason only. I have no sex drive at all. My boyfriend and I haven’t had sex for about 6 months. I was a hot red blooded sex maniac beforehand and now I couldn’t think of anything worse than sex. So strange! So I’m going to get it removed and see what happens…. also seeing as I’m heading into my mid-30’s I’d like to start thinking about my fertility and I have no chance with a mirena in there. SO….. to put all this in a nutshell…….. I think Mirena is a great option as long as you are aware of the ‘potential’ side effects. I have heard so many women who have had fantastic success on mirena. I think it’s important to remember that when you are searching for advice on websites like this, most stories that you will hear will be a negative story. People rarely share their positive experiences. So take it all with a grain of salt and get all the facts. But if you have endo and it’s ruling your life then Mirena will definitely get you back on track to a little bit of normalcy.

  19. Hi my Endo sisters!

    Just having a quick look at the great website, and remembering how not long ago I used to spend my spare time checking sites like this one, seeking comfort. I had the Mirena fitted in early May, seven months ago, and it has worked. Like many of you, I was pretty freaked out, but after three months of settling – and a bad period in my fifth month which scared me because I had forgotten, er, WHAT IT CAN BE LIKE – my periods disappeared, I just had one now, light spotting and something resembling a passing cramp for about two minutes the other day… That was it! I used to be in bed, stultified in agony, and had to cancel any social appointments, it was horrible. I would give the Mirena a try. Don’t be scared if it is painful for 2-4 weeks, because it will be, especially if you are nulliparous like me. I’m really grateful as endo took a massive amount of my physical and emotional time. I didn’t want a laparoscopy and so I havent been diagnosed properly, my gyn said endo and probably adenomyosis too, judging by symptoms and vaginal ultrasound, MRI scan didn’t detect a thing, I had my left ovary (guess it still is) stuck to my womb.

    cheers!

  20. ah sorry I also tried microgynon and yasmin, pills didn’t do a thing for me, and micro gave me lots of acne, but great mood, yasmin made me cry all day but my skin looked amazing… in short, agonising pain on the pill -not change whatsoever. Expect some acne on Mirena – I was prone to it anyway – but will subside slightly after 2 months, you do have to watch your caloric intake but I’m back to usual weight now. No side effects, maybe the odd erm wind.

  21. Mirena is the devil: migraines, fatigue, no LABIDO, weight gain, mood swings to the point i am bi-polar!! having it taken out. look up mirena side effects and you’ll see. the FDA should pull it off the market

    • I’m really sorry you had a bad experience with Mirena. I had all of that and more when I was on Lupron, which is not even approved for endo use. I loved my Mirena and a religious-zealot of a surgeon removed it without my permission during my last endo surgery. Now I can’t get it without spending $1000 — my insurance stopped covering it, which is a huge misfortune for the many women who loved it.

      I never made my experience with it clear on this site and I plan to rectify that. Again, I really hope you find something that helps you.

      I’m now on Lo LoEstrin Fe and it literally has the lowest of any hormonal BC on the market. NO issues, other than its failure to stop my cycle despite taking it continuously. I still suggest it!

      • If your surgeon removed it without your permission, you should pursue making him or his practice pay for replacement. He’s liable for damages he’s caused you during the surgical procedure he performed.

      • Unfortunately he suddenly retired in 2012 and I can’t even get my medical records from them, let alone follow up on legal responses. That is really something I’d love to find out about.

  22. Your style is really unique in comparison to other folks I have read stuff from.
    Many thanks for posting when you have the opportunity,
    Guess I’ll just book mark this site.

  23. I’ve been on the mirena IUD for about a year. I had it inserted about a month after my second laparoscopy which removed a lot of endo implants. The IUD has completely stopped my periods, which is wonderful, but has given me TERRIBLE ovarian cysts. My GYN has put me on several bc pills on top of my IUD to control the cysts (Beyaz, ocella, etc) and I am currently taking Lo Loestrin Fe. It helps, but I still am in significant pain. Does anyone have experiences like this?

  24. I don’t know whether it’s just me or if everybody
    else experiencing problems with your blog. It appears like some of the written text on your posts are running off the screen.
    Can somebody else please provide feedback and let me know
    if this is happening to them as well? This may
    be a issue with my internet browser because I’ve had this happen previously. Thank you

  25. Hey endo girls,
    I have experienced endo for a few years had depo never again and had the implant put in that didn’t help they decide to take it out in case. Had lap that help at the time but back 2 years later wat the.The pain is far worse than monthly stuff it’s like having a kid all over again well next option mirena don’t know if it will work but anything is better than the quality I got atm pain so bad nearly pass out or throw up and because people can’t see it they say oh you will be fine it’s just a little bit of pain fingers crossed it work goodbye endo grr.
    Anonymous Aust

  26. endosucks i got ur email and just wondered if my comment is still there. I not sure what rules you have that can get them removed. anonymous oz

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