@endohope 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
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.