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.

@NeverDropYourMooncup i had two scan before and after, checking the thickness, a small fibroid was mentioned, plus an ovarian cyst which disappeared on second scan, However I’m unsure re endo as years ago when this was found I had no symptoms. The gynae put the first mirena in then to stop anything developing. I’d already stopped my periods, so I wonder if it’s likely.

Not wishing to scare you but back pain can be a symptom of pancreatic cancer. It most likely isn’t but when you said about your digestive issues it is another symptom on the list

https://www.pancreaticcancer.org.uk/information/signs-and-symptoms-of-pancreatic-cancer/

I am in a similar position with back pain. As you can see from my username I also have endo and adno - and Ive had a mirena to manage this for years.

I had an mri last June and again in Feb and it's shown significant worsening of a disc that was apparently "only" bulging originally, which the nhs physio told me was "incidental" and to just do pilates, and the GP told me to see a chiropractor, despite the fact I had been in pain for many months, hadn't slept more than 4 hours a night during that time, and could barely walk let alone get on the floor to do pilates!!

The problem with MRI scans is that most usually they are done lying down which doesn't always show any nerve issues/impingements correctly! Additionally, as you are hypermobile have they considered sacroiliac joint dysfunction (and done a full sacral mri?) Please push for repeat imaging ASAP.

I stopped taking any pain relief month ago because it didnt touch the pain, gave me awful side effects and raised my Liver enzymes! However 2 weeks ago I was been prescribed morphine patches by a different GP in the practice (one who actually listened to me!) which take the edge off enough so I can manage basic tasks again and move around, and been referred urgently to the disc clinic and have an appointment in 3 weeks. So may be worth seeing a different GP if you have the option in your practice? Not all of them grasp just how bad things are, even when you are explaining the agony!

Alternating ice packs and heat has helped me at times too, when even diclofenac or max strength coocodamol didn't touch it.

Re: the spinal consultant saying its unlikely to be endo - he isnt qualified to say that!!! A lot of gynaecology consultants don't even know enough about endo, let alone a doc from another speciality!! If you do feel it could be related to that, push for a gynaecology referral! In the same way that I wouldn't expect a carpenter to fit me an new electric fuse board, i wouldn't allow a spinal doc to tell me about my reproductive system! May as well ask a dentist 🤣🤣

Good luck and big hugs x it is so debilitating and frustrating, it affects your whole life and wellbeing as its so all consuming!

@EndoadnowarriorThanks so much for your reply, and really so sorry you’re going through similar. It just sucks the joy out of life. The nhs have been really hopeless. The pain clinic have spine specialists and can order an mri, but the waiting list is months long. The last time I hassled heavily for an mri it took about a year to persuade a gp to refer. I’ve noticed they find it hard to grasp the concept of agonising pain. Most of the input I’ve had for my back I’ve paid for. Nhs physio for me, anyway, has been useless, hence finding one myself. I may well end up paying again for an mri and a pain specialist because the waiting list is just too long. I’m not rich but desperation eventually wins out.

The gynae I see and saw (also privately) first years ago, was to check if endo might be causing the back pain. I had no other endo symptoms. She said the only way to know would be a laparoscopy. This is why I then paid to see a spine specialists, what he said resonated with me. Namely that mine at that time and in episodes during the last nine years, was triggered by movement, that if the source was internal, it would present differently. What’s concerning to me now is for the last five months the presentation has changed. Previously lying still with a heat pad could stop the pain unless my back was in spasm, which required opioids. That’s changed, with this latest episode the pain is focused on an area of my spine and radiating to my sides, and can escalate irrespective of what I’m doing. It’s why I’m wondering if the increased progesterone has just kicked things up a notch, or the pain might be referred from a womb that just can’t handle the mirena, or the laxity the progesterone has caused has impacted surrounding ligaments and impacted a disc in the spine.

I think the reason why my pain is seemingly so easily not taken seriously by the nhs is I don’t have any red flags for disc involvement. I have no buttock pain, leg pain, weakness, numbness. It’s all lower and sometimes mid back. One physio I spoke to seemed pretty emphatic what I was presenting with didn’t indicate a disc/nerve issue. Do you have any of the red flags? Be really helpful to know as you have a diagnosis, and they always seem so certain with me it’s muscular but I’m not sure.

I’m really glad they’re now taking your pain seriously and doing something.

I do have pain all the way down my leg as well as very deep pain in my lower back and sacrum.

The other thing could well be arthritis - i also have this and take collagen which helps. They can give injections directly into painful arthritic joints if this is the cause.

The fact that your pain has changed and is now constant is an indicator that it is NOT muscular. Yes, core weakness of the muscles may be contributing, but it is not the cause and could still be a disc issue.

So frustrating that they don't listen!

@Endoadnowarrior i hadn’t thought of arthritis, that’s interesting. An injection that would alleviate the pain a bit would be amazing.

Yes, not being listened to feels simultaneously anxiety inducing and deeply frustrating.