My experience of using the Mirena to treat endometriosis pain

yep does the coil actually work to help with endo and pain i really hope so but doesnt seem like it 😥 – Laura Leigh (lleigh6) 19 May 2014

Thanks for the suggestion Laura! Remember anyone can request a a blog post topic using my twitter page.

The mirena is one of those love it or hate it treatments. You’ll hear people singing it’s praises, and you’ll hear people that have tried it and wouldn’t entertain the idea again.

This post is for the lady who sits somewhere in the middle. Perhaps your doctor or consultant has suggested the mirena as a treatment and you’re looking for some insight and personal experience about what it’s like to live with one. You’re keen for some relief from endometriosis pain, but you’ve also heard some horror stories about the mirena, and you’re not sure about it.

I can’t help you to decide if you should have a mirena, but after four years with one, I can impart a little wisdom about it’s positives and negatives. It is like many treatments, not perfect, but if (like I was) you’re desperate for some endometriosis pain relief, it may be worth looking into.

I’m not going to dwell too much on what the mirena is or how it can work, because I am going to assume you know this already, but I am going to share some more personal information about what it feels like to have one and what it’s like to live with one.

Why the mirena can be good for treating endometriosis

The mirena can be one of the most effective ways to prevent endometriosis growth long term. Removing endometriosis following surgery and then using a mirena (and/or pill back to back) is referred to as one of the best care pathways for treating endometriosis. This is because the mirena can be effective at suppressing the endometriosis growth (and therefore the pain) by stopping your periods. If it works for you it can restore a lot of quality of life back. Obviously it’s effectiveness depends on how much endometriosis growth you have and what stage of endometriosis you have.

The mirena (along with the pill) removed my periods entirely and gave me back a more stable quality of life. I managed the remaining pain (because there is still some pain) with pain management and exercise that was appropriate for me.

This treatment is generally one of the ones tried first for endometriosis, and it’s generally based on a few assumptions.

  • That you plan to start a family at some point in the future, or want to leave your reproductive systems intact.
  • Your age means that an early menopause (through injections or hysterectomy may not be appropriate for you).
  • That you want to reduce your need for further surgery in the future as every bit of surgery you have in your life has an appropriate risk.

Why many women with endometriosis find the mirena difficult

On paper the mirena sounds like the perfect treatment. Something that will reduce your pain to a more manageable level while not being too invasive, allowing you to keep your options open for the future. For many women (including me) it totally is, it enables me to be more active, which in turn enables me to handle pain more effectively.

The problem with the mirena are the numerous side effects, and how they effect you personally. I’m going to talk about the ones that effected me, but they broadly fall into two categories, the hormonal side effects and the pain.

Endometriosis, the mirena & hormonal side effects

Naturally the mirena introduces lots of of all those extra hormones, it will take time to adjust to these. I am no stranger to pain, so I expected some pain from the mirena (more on that later).

The other side effects were more subtle.

I started to develop migraines, there wasn’t too much head pain, but I got the flashing and aura colours in my eyes on a semi-regular basis. It was scary not knowing that this was, but over time this settled down and I haven’t had a migraine in about three years now.

I now have a decreased sex drive, there’s just no appetite for it at all. This is a more complicated effect I suspect, partly due to the hormones, partly a reaction to the pain (as sex for women with endometriosis can be painful).

I felt sick on a fairly regular basis too in the first few months. Sick to my stomach and I was certain I was going to throw up. I would come into work and look “green”. I may have even thrown up a handful of times. This is because the cocktail of hormones can make you feel nauseous until you get used to it. This is still something I get from time to time.

Endometriosis & mirena pain

Few consultants, nurses or doctors really talk about and explore the pain that the mirena can cause. They’ll say that you can expect some “mild cramping” “for a few weeks” and that it’ll settle down.

As a result, many women having the mirena implant inserted are often not fully prepared for just how uncomfortably painful living with one can be. I’ve only ever had mine put in under general anaesthetic, so firstly you could have the immense pain of having one put in during a regular internal exam, and the trauma that can cause. I know how uncomfortable many of you can find internal exams, because that’s already a painful, uncomfortable experience with endometriosis, so ask for localised pain relief or get a mirena put in while you’re having your laparoscopy if you can.

What mirena pain can feel like

Having a mirena can be much more uncomfortable for a woman who has not had a child. This point is not stressed enough to new users of the mirena and I am certain this accounts for much of the discomfort and pain that lots of people have with the mirena. If you’ve never given birth your womb remains small, and as a result your womb struggles with the foreign element of the mirena that much more.

However my mirena has been extremely effective at managing my pain, life-changing in fact, but to get to that point, I had to endure around ten months of a new type of pain (caused by the mirena). It was like having an angry uterus. The endometriosis pain was quieter after the surgery, but this new pain was there to sprinkle havoc into my life. The cramping, contracting, struggling pain wriggled in to replace the endometriosis pain for those months.

There were many times that I found the mirena pain as bad as the endometriosis pain. At my two month follow up after having it put in I returned to my consultant and said I had had enough and I wanted it removed. He urged me to continue if I could, to live with the burden of pain for a few months longer, to see the bigger picture of my pain rather than the immediate discomfort. That the mirena took time to adequately manage my pain and getting used to it would be worth it.

No one should ask you to endure pain, least of all me, however after each month it started to settle a little more, until the mirena fully tipped the balance toward pain creator and instead gave pain relief.

That’s where I am now, three years later, past all the hardship of settling with the new treatment and happily living with the benefits.

It’s a big ask, and just as everyone’s tolerance with pain is different the time it takes for the mirena to settle down is different for everyone too. From talking to many women who used the mirena for endometriosis, I’ve heard everything from two months to one year.

An estimated success rate

One of the consultants I know estimated that the mirena is successful in around 50% of cases. I know that seems like a really low number but that’s really pretty good odds for a treatment that isn’t too invasive, it may be worth a try. This might explain why the information out there is so hit and miss from person to person.

Getting a mirena replaced

I now have experience of this, and I’m happy to say that the outcome seems to be that if you can manage one mirena, your second seems to be much easier than the first. I was worried that I would experience a increase in pain and other symptoms, but there wasn’t. The second time around was much more settled. I didn’t have any horribly painful cramping and little to no nausea symptoms either.

I did have my mirena replaced under a general anaesthetic though, so it’s worth asking when if you have another laparoscopy if you can have your mirena replaced at the same time. Happily I can confirm that my first mirena has been successful and has drastically reduced my endometriosis regrowth. Looking at the pictures from my surgery my insides are much cleaner compared to my last two laparoscopies.

I appreciate these results are not the case for everyone and this is just my experience, but I think it’s worth sharing.

Would I get the mirena again?

Was the ten months of pain worth it? For four years of pain relief – absolutely. Will I get another mirena when this one runs out? Definitely.

However, the only person who knows for sure if this will be a good treatment for you, is of course you and your doctor, but hopefully I’ve given you some food for thought, and if you’re struggling with one now, there is a potential light at the end of the tunnel.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

58 responses to “My experience of using the Mirena to treat endometriosis pain

  1. Alyssa Luckowski

    Thank you for this post. I have been struggling with this disease since I was 15 and after surgery have had my birth control dosage upped for years until I can’t go any higher because of my age (I’m 19 now) so my specialist suggested this treatment option. I’ve heard good and bad things about this treatment but I need to try something else. My doctor did suggest anesthesia since I’ve always had trouble with internal ultrasounds and haven’t had kids so I’m glad that you suggestdd this as well. Thanks again 🙂

  2. My first mirena completely took away my periods but did little for pain. After 5 years I had it replaced during a laparoscopy and after nine months (pain and bleeding free) I started getting periods again. Now they are completely irregular and unpredictable but still not as heavy as those I remember from my teenage years. I’ve never had any pain from the Mirena itself but on the flipside, I’ve also never felt the benefit of pain relief from it. I think you’ve hit the nail on the head – different experiences for different women. Its up to the individual to decide after weighing up the options and what she feels is right for her.

    • Yep, I completely agree 100% they are not for everyone and have different effects on everyone and that’s precisely why it’s so hard for me to personally advise if they’ll be good for anyone else.

  3. Pingback: What is it like to have a laparoscopy for endometriosis? | Not The Endo The World

  4. Naomi

    I had a mirena inserted for endo just under a month ago during a laparoscopy to cut out polyps in my uterus and I’m experiencing cramping and headaches ever since. I’m trying to deal with the pain because I really want this to work for me. I have a check up with my gyno in January to see how everything is going. I’m 17 and I don’t know anyone else with this disease so I find it comforting to know that I’m not the only one to go through this.

    • Hi Naomi, thanks for getting in touch.

      I went to an endometriosis information day recently and a consultant there said that they’d recommend giving the mirena at least six months before deciding about whether it was helpful for your symptoms or not.

      This may be because it can take a long time for it to start working. There seems to be an adjustment period to get through before you can decide if it’s helping you or not objectively. Either way, I hope you get the pain relief you deserve.

  5. Hi Michelle, After my lap I was informed that they had replaced my mirena. When I asked why, they said that it was common practice as during your lap it may have been shifted. It might be an idea for any ladies having an op to request it’s replaced so as to ensure it’s still doing it’s job after the op.

  6. It was a relief to find this blog – thank you! I had the mirena fitted last week to treat endo and Im still in pain; my consultant and GP advised I need to persevere with it which I intend to but it is a real comfort to hear of similar stories – especially those which are from women who did endure the pain and can see the benefits. I will be adding this blog to my favourites in my phone 🙂

  7. Sandee

    I had endometriosis, cysts and Myoma does mirena really works? I want to live a normal life.

  8. Moa

    My endo seems very mild compare to some other stories here. I have mild cramping a few weeks before my period, sometimes stabbing pains in my groin (although rare) and 2 weeks out of 4 a month (from ovulation until mid period) I get deep pain during intercourse (I am still able to have intercourse most of the time though). Surgery is not on the cards for me right now as the doctors want to try treating me with the mirena first (probably because it’s so mild). I’ve been on the fence as the thought makes me uncomfortable, but I’ve been told at this point there are really no other alternatives than mirena or surgery (and my gyno said the endo can still come back, even if burned off).

    I think it will be worth trying for me, but I am very happy to have read your entry so that I am a little more prepared for what might happen to me. I’ve got a lot of bad luck with this stuff so I’m sure I’ll get some side effects. The pill have also worked terribly for me, so I’ve been a bit scared about that. Thanks for your entry, it has prepared me a lot more for the mirena, and what to expect, than my doctors, who seem to just cover the very basics.

    • You’re very welcome. You’re right to do into it expecting some side effects because you will, but it’s very subjective how it will effect you and how severe it will be. It remains to be seen if the symptoms will settle down for you and provide pain relief. Best of luck.

  9. Melissa

    Hello! Thanks for your post! I think it is so important for people like ‘us’ who have experience with this to let others know. I have endo and have a Mirena. I have had it for 3+ years now and my endo symptoms have been drastically reduced!! Though my Mirena has moved further down into my uterus, the ultrasound showed it was OK where it was and still an effective form of birth control (according to my dr) but it does hurt sometimes during intercourse.

    My dilemma is that I have drastically gained weight, at least 20 pounds since I got the Mirena. I have been working out harder than I have in my life over the past 6 months to a year, have been attempting to eat clean and cut out diet drinks and sodas with little results.

    I have been contemplating having it removed and not replaced, at first, just to see if I lose weight a little more easily. The trade off is the horrible endo symptoms will probably return with a vengeance and that scares me big time! Have you had any experience with this? I know you had yours replaced, but did you go any length of time without one at all or did they replace one with a new one during your lap?

    I am just looking for advice from someone who may understand. It is not the same to talk about it to someone who has never experienced having to plan your life around when you know you will be in severe pain and suffering. Thank you in advance!!!

    • Hi Melissa, this is a question I can appreciate. I too have put on a good deal of weight. I do take the pill back to back also though, so I don’t know how much is the mirena and how much is the pill. I had my mirena replaced during a laparoscopy so I had one taken out and another immediately removed. If you take the pill as well as your mirena it might be worth looking to see there’s an alternative that could be kinder on your metabolism?

      I can appreciate the choice you have to make between being comfortable in yourself and potential pain. I think you should give yourself some slack as the symptoms caused by the mirena can be hard to deal with also. I would also point out that the mirena may also be halting your endometriosis growth as well as reducing your pain, so if you decide to get it removed you should appreciate this detail also. I think it’s something worth discussing with your doctor or consultant.

    • Audrey

      I’ve had my merina for about 3 and 1/2 years. My endo started back up real bad and I put on 10 pounds that I can’t loose for the life of me. My dr said that the hormones have worn off that helps the endo ( he said their finding they start to after about three years) but it still technically works as birth control. I’m getting it replaced and am hoping once my hormones level out so will my weight. I have read that after you take it out for good the weight does come off but it’s pretty hard to loose it while it’s in.😒

  10. Lynne

    I’m 42 and have suffered from endo since my first period at 13. I’ve had three laps, two miscarriages and, as a last ditch effort before undergoing a hysterectomy, decided to have a mirena placed under general anesthesia in late 2013. As mentioned, I too wouldn’t recommend having it done in the office, especially if you’ve never had a baby. It’s just too difficult and not worth the added trauma.

    I agree with the others that sticking out the first few months is necessary. For me it was painful with very heavy bleeding and I nearly gave up. Then all of a sudden I was going months without any pain or bleeding – for the first time in nearly 30 years!

    Now that I’m 18 months in, I can already feel the effects wearing off. Pain is returning and so is some spotting, but I’ll be going back to my GYN to see if she’d be willing to replace it this year. Even if it only buys me a few more years, it’s been worth it, and a great relief to avoid yet another surgery…at least for awhile.

    • Time is extremely precious when it comes to endometriosis. I’m glad you’ve gotten some relief, best of luck for you and your next mirena.

      • Lynne

        Thank you! I did want to follow-up on my story above for others considering the Mirena. My pain is not from the Mirena losing effectiveness after just 1.5 years. After an U/S and MRI, it looks like it may have been a cyst and adenomyosis (endo in the muscles of your uterus). After six painful weeks, the pain’s subsided and I again am nearly pain-free, for now. I’m still looking into a hysterectomy, but as many of you probably know, finding a surgeon who has vast experience with excising deep, invasive endo (and is hopefully in your network for insurance!) is really tough. So once again, I just wait and hope for a few more years of relief.

  11. misty james

    Hi there had my merina put in on thursday and im 37 ive never had a period and i have pcos and epilepsy and im insulin resistance and they put the merina in because i have a thick lining of the wall and i was wondering what happens if with the merina in and it comes out in 3 months what other things can i do if i dosent work for what my problem is they put it in to try and start my periods but what if it dosent work

    • It’s hard to say Wendy, as I am not a medical professional and I don’t know your individual circumstances. I would advise that you speak to your doctor or consultant about the other possible treatment steps. They should have done so already, it’s always good when people highlight a few options for you to try rather than just giving you one thing only.

  12. Jenn

    I’m feeling so relieved after reading this! I had the Skyla inserted last week and I’ve been having crazy pain ever since…I was beginning to question if it was make my endo pain worse or what was happening. I’m glad to see the pain is normal or hopefully it’ll ease away and bring some pain relief to my typical endo pain!

  13. Laura Millard

    I was diagnosed with endometriosis after having my children. The pain has been incredible. Initially I had 1 Mirena then when that wasn’t working I got a second opinion as I wasn’t happy with the first specialist – he was basically heading down the path of menopause treatment at the age of 36! The 2nd specialist suggested adding a 2nd Mirena into the uterus as the hormones needed to be stronger to control the endo. After the surgery things have been great for 12 months but now the pain is coming back and its constant, even with migraines. Some day I just want to curl up with my heat pack! Its useful to know others are experiencing the effects of the Mirena wearing off after 12-15 months, so I will see my dr again as to what can happen from here!

  14. Rachel

    Hi, I’m so relieved that I have found this site! I’ve been diagnosed with Endo now for 11 years (stage 4), and have not been apart of any support groups, or even knew that sites like this existed! I’ve had 2 laparotomies in 2004 for large endometriomas, and 1 laparoscopic surgery in 2010 (which was a 5 hour op). I have been on the pill since 2010 to help manage my pain. However over the last year the pill has not worked so well for me, and I was advised I would need to stop it when I turned 40. Since I have stopped the pill my pain has increased significantly, although my scans are all good. I have been given 2 options – 1) Mirena, or 2) Hysterectomy. I really don’t know what to choose. I’ve never been keen on a Mirena, I’ve had friends who have told me how horrible it was, which has put me off. And I wonder if it will be a ‘bandaid’ for a short while, and I will still need the hysterectomy anyway? I really don’t how to decide :-(.

    • Hi Rachel, you need to ask your specialist for what relief they’d expect for you from a mirena. A hysterectomy is a big step, so I’d want to understand the long term plan of care of both those options.

      A mirena works best with surgery, so after an operation a mirena is often put in so that the endometriosis is removed and the mirena can be used to lessen how much the endometriosis grows back. I’ve described the mirena as best I can, but know that there’s no perfect treatment for endometriosis – including a hysterectomy, hopefully your specialists have prepared you for that and explained what medicines you’ll need to take in order to go through what would be essentially a premature menopause.

      • Jewl

        A hysterectomy (according to my gyn) is not a cure. They will leave the ovaries in and as you know with stage 4, you can get the endometriomas on the ovaries and that causes a lot of pain. Definitely do your research and ask a lot of questions. I was shocked to hear this bc I just wanted the cause of my pain out of my body, and even that will not cure the issue.

      • Yes, the idea that hysterectomy will solve endometriosis does prevail. I have a shared a success story, but I’m struggling to find someone who’s happy to talk about a hysterectomy that didn’t go well.

  15. Bianca

    I am so glad that I found this Blog!!! and that I am not the only one suffering on a day to day basis. No one else I know suffers these same systems.
    I first got my period in back in year 5 when I was 10! Ever since my first period I have had reasonably bad pains, for which I just want to fold myself in half and do nothing or cry. My periods where regular up until I hit year 10,11 and 12 where my cycles started to be irregular and even more painful. In year 11 and 12 the most horrible of pains happened in my ovary, pelvic, hip, abdominal, back area and vagina. Also in year 12 my libido was quite high. I found quite often that I was ovulating twice in my cycles. I had trouble concentrating and studying because of it. I found the gym, horse riding or walking helped a bit on these days. I have also noticed in these last few years that I have become more emotionally unstable, randomly crying, feeling depressed and grouchy ( I hate been bitchy), all hormonal linked. I kept seeing my GP about all this, had many blood test for which one of them came back with a high hormone level for Poly-cystic Ovaries. Dr then did an ultra sound on me which didn’t show anything. She then explained her diagnoses to me like this “you have the wacky hormonal side of it but not the cystic side”.
    Eventually in year 12 my GP put me on the pill. I went through many different doses of them as they just kept not working. I was still having lots of pain and irregular cycles. I have been on all sorts of pain reliefs none of which have worked completely but have at least sometimes taken the edge of this. I often go to bed with a hot water or heat pack these days, more of a comfort factor than anything.
    The first time I had intercourse was also quite painful and no matter how many times we did it always seemed to hurt. My partner at the time and I, did work out some positions that didn’t hurt as such and did those.
    On top of this I also suffer from chronic migraines which are caused by imbalances in my hormones. My Migraine’s are different to those of regular ones. As I wake up with them or they come on suddenly during the day. I get really shocking head pain, sensitive to light, sound, smells and movement, nausea like I’m going to vomit, feel weak all over, tired and unable to concentrate on anything. I have also been on various medications for these as well. None of which have completely worked either but at least at most times taken of the edge so I can functional so what normally. The best thing I have found to do is to try and sleep them off in a dark room, with the covers over my head to block out any other light and drown out noises from outside such as birds. I always make sure I drink plenty of water.
    I have lost count of how many days I have had off school or cancelled plans with friends and even work because of really bad pain and Migraine days for 😦
    I also have joint pains for have been tested for as well (not arthritis, or rheumatoid athirst or cancer but are all inflamed for some reason).
    After not getting anywhere with the pill I went and saw a Gynie with all my symptoms (before I saw her I did some researching into my symptoms which lead me to Endo). I know it dosen’t sound as horrible as some others on her.
    She told me to get off the pill straight away as the dose I was combined with my migraines was 4x more risk of having a stroke! She told me about the Mirena and recommend that I get it. When she first went to examine up there it hurt a lot! So just after my next period I got the Mirena put in April this year. That hurt a lot, I was nearly in tears by the end of it. She had trouble putting mine in because my cervix was off to one side more than it should’ve been. I would differently recommend if you can to get it put in under anesthetic to save you the trauma. At each check up to make sure the Mirena is in the right, it always hurts and I nearly up crying! Throughout these visits I am still getting her believe me that I have Endo as we have ruled out everything else. She wasn’t believing me because I was too young at the age of 18 to have such a thing! And to eat healthy and exercise along with drinking plenlty of water. For which I already do!
    Anyway on my last check up with her, with me practically screaming at her when she went to check if my Mirena was in the right place she said that I do have a few Endo spots. I was told to hang in there because the Mirena would help to control them and that when I see her for my 6mths check in Nov if nothing has improved she’ll wack me in theater for a lap. She said to me that she doesn’t want to cut me open because I’m tiny and young. These last few months with the Mirena in haven’t been the nicest as I have been getting really bad nausea and nearly vomiting on a lot of occasions and not wanting to or know what I feel like eating ( have got anti nasuea tablets now) My weight has also dropped from 48-49kg to 45.82kg. I know I haven’t been to the gym the same lately so that’s a factor in the loss of muscle but I wasn’t that big in muscle to begin with. I have reasonable amounts of spotting on and off, still have a high libido at times as I am still ovulating twice at times, pains aren’t as regular but just as bad especially ovulation pains and vagina pain everyday which makes it hard to concrete some days. I am still getting Migraines regularly to (3 in the last 3wks) and days where I just can’t do anything 😦 Even at this young age I have considered getting a hysterectomy just to stop it all as I’ve had enough.
    Also saw my GP again and she said that the Mirena wan’t stop the Migraines and or what my ovaries get up to but just the lining in my uterus, contraceptive and possibly the spots I have.
    So I am some what confused and wondering if the Mirena isn’t going to work and I can’t have the pill or bar what other options do I have that will control such things?
    My family also has a history with ovarian cysts, bad pains, heavier flow, my Mum had Endo. For which she has had the op and has been fine since.

    I really hope it’s worth hanging in there!! Thanks for all your inspirational messages. I hope by sharing mine that it’ll help someone else.

    We certainly are strong Women!! 🙂 xo
    Men have no idea!!

    • Rochelle

      This is so crazy reading your story I’ve have the same things go on… although I had the surgery to have the spots removed and they punctured my bladder which is a whole story.. but I was fine for a few months after my surgery and then I ended up getting the Endo pain back so I did the Lupron shots for a year and that helped for that year and a few months after my last shot the pain started yet again. I have severe migraines as well and can’t take birth control. My gynecologist has recommended the Mirena and I’m a nervous wreck if this will give me relief make it worse as far as my Endo pain and my migraines. I’ve been considering having hysterectomy to be done with the pain but I’m still so young 27. Im just a at a loss of what to do.

  16. matchcut

    Hey! Hopefully you’re still answering comments on this post! You mentioned you had a Mirena and the pill. Did you take both simultaneously? I’ve had a Mirena in for about 10 months and can’t complain too much – stopped my periods but I’ve also been through the ringer since May 2015 with laproscopy and extensive laparotomy (lost an ovary). I’m now having second thoughts about the Mirena as it truly does not inhibit ovulation (therefore estrogen production) in many of its studies even though periods stop (it affects the uterus; not the ovaries). And since I’ve learned endo feeds off estrogen, I’m concerned. I’ve considered asking about also trying out an oral method along with the Mirena – Visanne in particular. I don’t want to lose the Mirena, as no painful periods have been a life saver. You’re so right about it taking time to adjust though!

    When I saw you mentioned both the Mirena and the pill, I had to ask if you’ve done both together. If so, what pill were you on?

    • I’ve only ever had the mirena and the pill together. I take noromin with no breaks and have a mirena also. My periods have stopped entirely. No spotting at all.

      I used to be on microgynon, but changed to noromin when I started spotting.

  17. k

    Hi! I am almost 25 and have recently been diagnosed with endo via laparoscopy though I have been suffering with endo since I was 15. I am looking for any advice regarding treatment options. I have already learned a lot by reading through this site and the comments, so I thank you ladies for that!

    My main issue with pain is the first day of my period, which always results in me curling up in a ball with a hot water bottle that provides no relief. I think I mainly use it for piece of mind so that I know I am doing everything humanly possible to help with the pain. This pain paralyses me and lasts between 4-6 hours. Usually I throw up and or get diarrhea. Once I almost passed out because of the pain. Other than this, I can function through any other pain that I get caused by endo.

    ________________

    My Treatment Methods: (1 yr of being a guinea pig prior to diagnosis)

    After my surgery, when they removed the endo, my Dr. said (given her experience with other patients) that I should be free from pain for up to 3 months to 5 years. Naturally, I was hoping I would get lucky and not have to deal with ungodly period pain for at least a year. Unfortunately when I got my first period after my surgery I knew I was screwed. Upset that I didn’t even make it to three months I decided to wait another month to see if the pain would lessen. I thought that it made sense that my first period after surgery would be painful given what my lady parts had been through. However, my second period was no better. Fortunately I had some Vicodin left over from my surgery. To my surprise the Vicodin allowed me to sleep through the pain, which for me was a miracle.

    When I was being treated for dysmenoria or endo before my surgery, my doctor had me take 800 mg of Ibuprophen up to three times a day (hoping to bypass the pain). When I took the 800 mg of Ibuprophen at the first signs/symptoms of my period, as recommended by my doctor, my period would actually stop. Sounds great, right? However, as soon as I stopped taking the Ibuprophen my period would come back with vengeance. A very short-term cure and I personally have used this method to delay my period before an important event that I cannot miss. The delay usually lasts between 1-3 days before I am back to square one. That said, my Doctor told me that the Ib is supposed help with the pain not stop your period, so I am a rare case.

    After another failed attempt of treatment I then was put on a Progesterone (norethindrone acetate). This was the medicine that broke me. I tried it for three months and was miserable nearly every day. I came to the conclusion that I would rather experience 6 hours of hell than daily bearable but persistent cramping. Mind you, I was also dealing with hot flashes, night sweats, horrible dreams, mood swings (I was actually out to get people / felt like I could cry at a moments notice), body aches, weight gain, nightly nausea (I was told to take my pills at night to sleep through it, but that didn’t always work), and would experience up to 5 sudden migraines a day. After three months of feeling like a monster my Dr. and I thought it was time to get a proper diagnosis through surgery.

    _______________

    Now that I am experiencing pain again my Dr. says I need to take action. She is suggesting to go on Mirena but I am apprehensive given my horrible experience from progesterone. I have also been on birth control before (ortho tricylin), but that also made me hormonal and gain weight (my jeans were already tight to begin with). My main issue with endo is having severe pain 4-6 hrs on the first day of my period. The other pain I experience is manageable. My current thought is to get a monthly Vicodin prescription for those 4-6 hours. I would only need to take 2 Vicodin pills each month. If I did this method my only worry would be the potential scarring that is going on inside my body and hoping it doesn’t affect child bearing. Does anyone else treat their endo pain with Vicodin only? Thoughts/guidance?

    Also I hate to bring this up but the struggle is real. Constipation. Does anyone else have this issue? This happens to me 2 weeks prior to getting my period and is accompanied by mood swings.

    I would really appreciate any of your advice, thoughts and experiences. Thanks!

    • Sounds like you’ve been through the ringer like many of us. I feel for you big time. I can’t offer a ton of insight on pain relief because I’m personally trying to figure out what works for me – I generally take half an atasol 30 at the beginning signs of intense pain and if I take it fast enough, it can majorly help. I am sure not to take it unless I deem the pain to be bad enough, as I do not want my body to grow adjusted to the narcotic dosage. If the pain is on the mild to medium scale, I always attempt OTC drugs first. Aleve/naproxen is generally what I use,

      As for the Mirena, that I can comment on. I’ve had one for almost a year now and I have to say, it’s got its pros and cons. The major, overweighing pro for me is that my periods stopped by month three. This is huge. The only con is that it seems to be making me more likely to have ovarian cysts, which is a big bummer. As well, you must remember that while your periods may stop, the Mirena does not suppress your ovulation. For this reason, you’re still running the risk of developing endo as it feeds off the estrogen the ovaries secretes monthly. On the topic of progesterone, it is a very localized dose just to the uterus. I’ve had no major hormonal side effects. This may be a great option for you. I will warn you though, insertion is so horrid. If you’re being put to sleep for any tests or surgery, ask them to place the Mirena then.

      I myself have been considering asking to also go on a low dose birth control to suppress my ovaries, along with the Mirena. No periods, no ovulation could lead to slower growing endo. I looked into progesterone but am hesitant.

  18. Patricia R

    I’ve had Mirena for about one year now and my endo pain has returned. I still have my periods regularly every month but they’re light. What do you think I should do now?

  19. Thank you! You have no idea how much I needed to read exactly what you wrote. I am currently just 3 months shy of having the Mirena inserted (during laparoscopy) and I was ready to tell my surgeon (in 2 weeks) that I’ve had it! Lol. You’ve just restored my hopes that this will all be worth it, eventually. 🙂

  20. Kimberley

    I had almost the exact experience with my time. It’s been like 3 years and the first year of bad pain and little uncommon cramps I still get are so worth it compared to my endometriosis. I didn’t go under to have it put in and it was awful but I’m willing to go through that again for the life I’ve been able to have without my monthly trips to the ER and surgeries caused by the havoc of endometriosis. Stick with it, it took a year for me to see improvement and I’m glad I toughed it out. Finally some help!

    • Sharna

      Hi guys,
      I feel i may have a rare treatment….but i thought id ask if anybody is similar. I have been 15yrs treating/supressing endo. We have gotten rid of all that we can via removal, but dr knows it is in the muscle of womb. He is treating this by 2 merinas…. yes!! 2!! And pill. I am feeling many downs but i have only replaced the 1 previous with 2 new in dec 15. I have so much back pain and miagraines. I rememeber having it with the 1 but cant remember how long they lasted for. Anyway just thought id ask if anybody has the 2 in.
      Cheers
      Sharna

    • Sadie Plotecher

      Thank you for your encouragement! O really needed it after my trauma of having it inserted a couple days ago and currently experiencing the cramping. I was misinformed of both by my provider.

  21. clair

    hi i found this so good to read, im getting my first marina put in tomorrow ,im still a bit unsure im booked in to have a operation for the endo in july , my problem is the pain n side affects as i have chronic pain due to fibro n costochondritis n the pain from them is bad enough along with lower back pain thats got worse they said the lower back pain is related to the endo.to be honest im scared to do it n not to do it i cant pay the $76.00 a month for the medication they also offerd . i’ve spoken to my gyno my other specialist for my other health issues my chemist n tomorrow i will speak to my local dr who will be doing it before hand.

  22. Holly Arnold

    Thank you for your blog, and for your info here on Mirena. I was on Depo-Provera for about 7 years (3-4 yrs longer than most pros suggest!) before finding my current specialist, who I LOVE! We did 18 months of Lupron to suppress everything and quiet the Endo (mine is on my ureters – among other places – and therefore inoperable). He then wanted to place the Mirena, but my uterus was WAY too small after not having any estrogen for so long. So I’ve been on NuvaRing back-to-back for the last 6 months to “plump up my uterus.” Now it’s time for Mirena.

    So my real question – have any of you had Mirena after Lupron? Can you relate the two experiences? I’d heard MANY horror stories about Lupron, too, which turned out to be a God-send for me. So I’m wondering if Mirena will be the same. Thanks in advance for any feedback!!

    • Holly- I have taken Lupron for 6 months and am on my 5th year of the Mirena. It has helped my endormetriosis. I haven’t had any pain in the last 3 years. I am getting the Mirena replaced in a few weeks. I didn’t like the way I felt taking Lupron, the Mirena has worked much better for me.

  23. Rachael

    Hi,

    Thanks for posting about your experience. I was just wondering what the pill was that you used in addition to the mirena? I have endometriosis too and it was ruining my life. I ve had the mirena in 3 years now and once getting over the initial pain it’s been the best thing for me. It’s only now I ve started with pain and a very light bleed in rhythm with a normal cycle. The doctor suggested taking cerelle mini progesterone only pill as well to stop pain and light periods but I’m worried to take it as it can increase the risk of ovarian cysts, and I recently had to have laparoscopic surgery to deal with a large ruptured ovarian cyst that made me really ill. Never had cysts before the mirena. Would like to get the mirena + pill combination right and find a good balance!

    Hope to hear from you.
    Thanks
    Rachael

    • I started to get light bleeding when on the mirena, so I changed my pill brand from microgynon to norimin. I’ve had no problems since then. Maybe you could try a different brand before the mini pill?

  24. Tracey.

    I am booked to have a mirena put in soon at the same time as a polyp removal. I also have 3 ovarian cysts. I read that mirena can increase the likelihood of developing cysts. If I am already prone to them, is it a good idea to have treatment that could increase the risk of more developing?

    • Tracey

      I am now on Day 44 after having the Mirena put in. Sill bleeding every day. It is not a lot (certainly much less than regular period) but it is every day. And cramping most days too. Again nowhere near the pain I experienced before in the first few days of my period but enough for me to be taking painkillers much more often than before. I know I need to wait a month or 2 longer but I always have an allergic reaction to sanitary products so this perpetual bleeding is driving me crazy. (I used to use a menstrual cup for my periods but the doc told me I can’t use this now as it could dislodge the Mirena). Hoping that things will sort themselves out within the next 2 months or I will have to weigh up whether it is better to have it removed.

      • Hi Tracey, worth getting a second opinion on that I think. I don’t see how wearing a menstrual cup would affect things, but please check first. For example mirenas are primarily used for birth control, but you’re not advised to stop having sex after your initial recovery time. I’ve not heard of any other women asked to stop using tampons or anything similar so please ask for another opinion on this. It could make all the difference to your quality of life.

  25. Karina

    Thanks for sharing your experience! I’ve had my Mirena for 2 years now and just had my first lap for excision 3 weeks ago. I also dealt with pain for about a year after getting the Mirena and then my endo symptoms worsened and got more frequent (almost daily). Symptoms have definitely improved since surgery already however I was also diagnosed with interstitial cystitis and I’m now finding some links between the Mirena and bladder problems in my research. I think I’ll leave it in for another 3 months, just so I can document my symptoms since the lap and then remove it to see if bladder symptoms improve. Let me know if you’ve come across any resources or heard of this link between Mirena and interstitial cystitis (the “evil twin of endo”) before. Thanks again!

  26. Harmony

    Did you have surgery first then use Mirena?

  27. vicky prosser

    Hi I was just wondering did u loss weight or put it on with this.
    many Thanks

  28. Sadie Plotecher

    Thank you so much for this information. I wish I’d read it before they insersted the new kyleena IUD into me a couple days ago…. I would have at least asked for a local anesthetic. But now i know the pain during and after is normal, esp with the small womb. I hope they fixed some of those hormones with the new kyleena… I’d hate to lose my sex drive in the beginning of my 2nd year of marriage. Thank you for your insight. I hope I can keep in mind the long term help with the endometriosis pain and endure this current pain for now. Again, thank you for your information.

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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