AIBU to think my mirena coil might be causing my back pain?

[myannoyingback]

Apologies for the AIBU thread but I’m at the end of my tether with this pain, and hoping to find as many posters as I can who may be able to shed some light on my situation. I’m a regular poster but changed name for this.

i’ve used a mirena coil as the progesterone part of My HRT for the last 6 years since my periods stopped. I struggled hugely with progesterone pills and patches, they caused migraines and rage. I had dreadful menopause symptoms, off work for months. HRT saved me as did my original coil.

I have a many year history of intermittent back spasm and back pain, often lasting weeks. However these incidents have always followed the same pattern, major agonising spasm, followed by getting moving and slowly recovering over a number of weeks. In the past I have seen a spine consultant and had MRI scans twice, (nothing major to see, cause thought to be muscular) physio etc. I always have to be careful with my back.

A week after insertion of the 2nd coil, I developed the most intense pain on my spine about 5 inches up from my coccyx, and intermittently in the area around where your thumbs go when you put your hands on your hips. A few weeks in I had a scan to check the mirena placement. All good. I have been showing very slow improvement, going from virtually bed bound, to more mobile around my flat. My back was so close to spasm all the time I didn’t start physio, by zoom, which I am paying for, till 3 weeks ago. I am also seeing a pain psychologist for pain reprocessing therapy. However I am SO disabled by the pain and just lucky I wfh part time. I am hampered by not being able to use ibuprofen other than gel, or much opiod/codeine based medication due to another medical issue. I’m now mostly sticking with paracetamol and occasional low dose valium.

Chat GPT (better than my GP) and the physio and psychologist, all think it’s worth sticking with treatment. However I’m riddled with doubt as I have found a handful of posts online from women who suffered dreadful back pain, which went almost immediately when they made the connection to the mirena and had it taken out. I’m curious what this pain was like? Going into legs? Accompanied by abdominal pain or spotting etc? I have no other mirena type side effects now apart from very low mood, but having been stuck in my home for months I’m not sure the mirena is to blame for that!

I oscillate between thinking I’m making very slow progress and I should hang in there to, this is ridiculous, it’s the coil, what the hell am I doing. Obviously if my HRT wasn’t so dependent on it, it would have been out months ago. I haven’t tried every other form of progesterone, but based on previous experiences don’t fancy my chances if it’s systemic. My menopause symptoms were so severe i would likely be forced into early retirement without HRT. I can’t afford this. Although this could be preferable to barely leaving my house!

SO MY POLL IS

IABU, stick with it, keep going with treatment.
IANBU, get it out, it’s the obvious culprit.

I welcome your thoughts.

Have you got any other symptoms like weight loss, loss of appetite, feeling tired, indigestion pain?

I’m not sure how it could be causing back pain, but perhaps you need to trial having it out and see what happens? I suppose that’s the only way you’re going to know. Stranger things have happened!

Unfortunately it is a known side effect, just not sure if it’s a side effect for me or not.

@VanillaImpulseI am very tired but in chronic pain all the time so hard to say if it’s the mirena. I had initial minor breast pain but that went.

Sorry your pain is so bad. I can see why you're inclined to think it's the Mirena but rationally

• you had a history of sudden severe back pain well before this
• a handful of posts isn't much and there's no real evidence it was the Mirena in those cases either

It sounds like you need better pain treatment to me. How long have you been seeing the pain psychologist for?

Given where the pain is (thinking about where your thumbs are with your hands on your waist) have you ever looked into piriformis syndrome?

@Shakethediseasethanks for your reply. Seeing her for about a month. There’s a frustrating five month wait for the NHS pain clinic. I’m having to pay for these treatments, GP and nhs physio have been pretty useless.

@OblivionnnnnI haven’t but will do now :) Thank you.

@OblivionnnnnJust looked into that, but what’s notable (I’ve been asked a few times as people are looking for nerve involvement) is no leg pain.

Have you had a recent back x ray? Could be a thinning of a disc at the bottom of your spine triggering nerve pain. Nerve pain doesn’t always go to your legs and that fact that you said it’s where you put your hands on your hips exactly correlates to nerve pain from a thinning disc

Ah ok. It was just a thought. I’m glad for you if it isn’t that tbh!

@Graceyfields Thank you, that’s interesting. My last mri was a year and a half ago. That showed very little of not. Although the fact the pain has changed from previous episodes makes me wonder if I do need another one. What can they do about a thinning disc?

depends on how far the disc has thinned. Sometimes the discs can rehydrate to take the pressure off the nerve. Physiotherapy/ chiropractic treatment and loads of water. Or at the far end surgery and disc replacement.

I would definitely ask for another MRI after the last few posts. Could well be that something has changed since the last one and hasn't been picked up. Sounds like they've gone 'ah, it's your old trouble' too easily and not looked for other possible causes.

Have you ever had an abdominal and transvaginal scan? My lower back pain was investigated with MRI, I had physio, hydrotherapy, pain clinic referral and was eventually decided to be 'chronic'/'the brain gets used to thinking there's pain' (ie, is in the head).

I've got adenomyosis and very possibly endometriosis over the ligaments and in the Pouch of Douglas/referred pain from the weight of an enlarged uterus and suchlike. I asked if it could have shown up on the MRIs for back and hip pain but the rheumatologist showed me the images and basically, unless somebody specifically orders an MRI of the uterine area, they aren't looking at it as even a possibility, so there's nothing to see as they aren't looking for it.

It's worth considering progesterone causes ligaments to be extra stretchy. It helps when giving birth. I can't tolerate progesterone in high amounts, natural or synthetic, it makes me dislocate because I'm hypermobile. Even a slight dislocation sends my muscles into spasm to try and hold the joint in place. The muscle in spasm doesn't often correlate to where the pain is. I often have hip pain, but it's my glute in spasm and stretching it usually helps. Could this be something you have looked into? I find NHS physios don't pick up on this, they simply don't have the time to look. Private physios usually do though.

I’m pretty intolerant of progesterone so only take it for two weeks out of every eight as part of my HRT and get the most awful back ache during that time. As soon as I stop taking it, the back pain goes until the next time. I read somewhere that it is a common side effect with the tablets so guess the coil may also have the same problem.

Have you ever tried Pilates? A lot of back pain is caused by overusing back muscles. Pilates teaches you to use your abs instead, which are better able to take the load.

Are you a healthy weight? How active are you normally (when you haven’t got back pain?

Have you been doing physio?

Unfortunately back pain often starts around the menopause due to falling estrogen levels, which have various undesirable effects, along with the fact that increasing age tends also to have undesirable effects such as muscle deterioration.

@Graceyfields Sounds like I might need to pay for an MRI scan. The only hope of getting one is through the pain clinic which is months away.

@NeverDropYourMooncup i had a transvaginal scan to check the mirena placement. They did once find what they called a ‘chocolate cyst’ on a scan which apparently means there’s some endometriosis. I asked the spine specialist about this years ago and he said endo pain didn’t fit my pain pattern in my back which was much more muskosceletal.

@DelilahBucket i am hypermobile. It’s the one thing i forgot to mention. I have sought out a physio who specialises in hypermobility, although she hasn’t honed in on the progesterone aspect, although I told her about the mirena. That said, I had a mirena for 6 years before and the spasm/back pain episodes pre date the initial mirena. Although I’m older now so maybe I can tolerate the progesterone less as muscles become weaker.

I’ve heard people saying they have this reaction before, which is what’s worrying me. I keep thinking maybe if I just take it out this back misery will be over.

@dizzydizzydizzy if I could do a Pilates class I’d be over the moon. The pain and possibility of spasm has been so extreme it’s not an option. I am doing physio but am restricted in what I can do. I think a lot of physio these days is quite Pilates based.

i’m pretty thin as I have a digestive disorder which restricts what I can eat. When not in pain I am an avid walker, if I can do a journey by foot I do. This keeps me fairly healthy.

Gynae could be more helpful than a male ortho here - have you read the latest report? Is it purely to check placement or does it describe anything else about your uterus? Even if that's all fine, it can't see whether you have endo outside the wall, especially if they weren't told to look for anything other than placement.

I meant have you done Pilates in the past? I’d recommend it for when you are better. Although go to a small class in a community hall, rather than a leisure centre class with 40 people. It’s important that the instructor can keep a proper eye on you and give you individual help.

Also have you tried heat? An electic blanket under your bottom sheet and a heated up wheat bag thing stuck in your waistband when you are not in bed. These things are more effective in my experience than those stick on Deep Heat patches.

sorry you are in so much pain.