Mirena Coil or Nothing: Just went for my... - Endometriosis UK

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Mirena Coil or Nothing

theallnewme profile image
13 Replies

Just went for my gyn referral after a normal ultrasound last month. Now I'm being told by her that if I do have endo it's mild and my only options are to lose weight, get a Mirena or nothing. She said she'll reassess in 8 months. I've been having these problems for 4 years now.

I'm in so much pain on my periods and around them. And I don't know where to go from here now because I want no pain but I want children in the next few years so the Mirena seems like a waste to me.

I don't know how to lose weight, I already eat as healthy as I can afford and I have no time to go to the gym I work in retail so I'm on my feet 24/7 already and have Lumbar Lordosis in my lower spine so I have serious pain by the time I get home and I struggle to excercise outside of that.

She gave me a leaflet about a lap but because of my weight and lack of obvious severity she basically said there was no point due to the surgical risks.

What do I do now? Where do I go from here? Am I just meant to deal with the pain for the next 8 months? Because mentally I don't think I can cope

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13 Replies
luthien profile image
luthien

Aww, I feel for you :(

What are they expecting to change in 8 months? Your weight? How did they define you as "too much risk"?

Did they take into account your lordosis? Your lifestyle? It's annoying to have the docs put the stamp of "lose weight" without knowing our lifestyles.

On the point of weight; I found hormones actually resulted in my weight gain - so many women have reported this. Okay so it was a combined pill, I don't know if the hormone coil does the same.

I am not overweight, but my BMI places me in the obese range. The BMI is annoyingly what's used to determine "health", which my end specialist hates as do the pre op nurses; they say it doesn't take into account muscle mass and fat ratio, it just uses total weight. My GP looked at my BMI and said "lose weight" (I know your seeing a specialist), I switched GP and after she went through a list of exercises I do, my diet, she uses waist, thigh and upper arm measurements to record weight plus that pinch method thingy. I like you; eat healthily, I have a bad lower back (office job) I do hours of polefitness, gym rings classes, handstands classes, core strengthening, HIIT and lots of walking - I'm still classed as overweight.

You are entitled to a second opinion, so possibly see a different doctor, you definitely need to be referred to an endo specialist; they'll know what the risks are - it's still a laparoscopy but they know where to look, what to look for and quite often can excise the endo at the same time, so reducing the risk of multiple operations. An endo specialist will want to do a lap for the above reasons - you can't see what you have or what's going on unless they look inside. You'll need to go back to your GP and push for that, explain how you'd like a specialist.

You say you work, do you have benefits? Most employers offer medical / health insurance. Some you have to pay an amount, some offer it free. If you have it, and can sign up to it, you can get referred privately, there will be contact details on your work HR on whom to talk to to ask how it all works. Private gives you quicker treatment, with an endo specialist, whom also does the lap, and will see you for aftercare, they may be able to do the lap as they'll be more prepared for the risks - the NHS just whisks you in standard lap by gynae, and out quite often the same day with all notes to GP.

If you're really not keen on the coil then you have part of your answer, research it though there are pros and cons, ask on here what experience are - I've not had it so I can't say. It may help you for a bit, so you can manage. I guess you need to ask if you want to know what's going on, and what can be treated surgically then see where life takes you once you've recovered? If so then that's what you push for 8 months later or right away.

Sorry I'm not much help x

theallnewme profile image
theallnewme in reply toluthien

You've been very helpful thank you! I'll see if there are any specialists in my area. Unfortunately my workplace offers no benefits as all our contracts are part time I just work a ton of overtime on top of my contract hence I'm always there. Of course they didn't take my lordosis into consideration as my dumb arse GP doesn't even care about that they diagnosed me with a sprain that lasted 2 years🤦‍♀️ it was a physio who diagnosed me and I don't think it's actually on my records.

I don't think it's the risks so much putting them off a lap as it is the fact they only have my symptoms to go off of and my ultrasound was clear and showed no tilting of my uterus so they class that as "oh it's not bad enough for a lap"

I'm honestly angry and upset and I feel like I took so many steps forward to just end up in the same position I was in 4 years ago when I first complained to my GP 🤦‍♀️

luthien profile image
luthien in reply totheallnewme

Endo doesn't show on an ultrasound, which is why the only formal diagnosis is a lap, it has to be visibly seen. Unfortunately GPs and general gynae don't know that or I guess ultrasounds are cheapest and keeps people quiet. It's so annoying.

I get how you feel, for some reason they just aren't informed about the female problems so just brush it away. You need to see another GP!

theallnewme profile image
theallnewme in reply toluthien

My GP was actually great she 100 percent believed me and said she would support a diagnosis of endo it's the gynae who said no 🤦‍♀️

luthien profile image
luthien in reply totheallnewme

ah no pants, sorry I didn't quite get what you meant.

ilytotoro profile image
ilytotoro

Hi there,

I seen a specialist a few months back who said I would need to try the coil to help with pain as they dont want to do another lap due to me being under 25 and ive tried pretty much every other option for pain relief, I decided to go ahead and give it ago as my gynae assured me its very simple to remove and you can get pregnant very soon after removal.

It may be worth just trying it out and seeing if it helps and if its not working for you, you can get it removed at your next appointment.

Ive been on it for a little over 2 months now with no period, the first week was pretty painful but now the pain has improved a lot.

Hope this helps a little :)

theallnewme profile image
theallnewme in reply toilytotoro

I'm debating it I just have heard of many people having bad experiences with the Mirena coil and with my bad luck and medical issues I would deffo be one of them poor souls 😂 if I can't get anywhere in regards to a referral to a specialist then maybe I'll give it a crack I just really want a diagnosis so I don't feel like I'm going insane and imagining it all 😂

Danijordi88 profile image
Danijordi88

Hi, i just wanted to drop a quick message to say that I was told to loose weight and change my diet to try help control suspected Endo whilst I waited for lap surgery. I did get a really good personal trainer who also had Endo! She was amazing so really helped me on the bad day. I lost 3 stone in 8 months wait for surgery. I also had a coil fitted. I am 14 weeks post op/fitting and wanted to say my coil is fine and it’s really helping. The negativity online over it is astonishing but people do only tend to rant about things that don’t work. The only thing you can do is try it xx

theallnewme profile image
theallnewme in reply toDanijordi88

Thank you I think I've decided to just try going back to cerezette for now and see how that goes first before getting a coil as for the losing weight I'm going to join slimming world and see how I do unfortunately I've just finished uni so I'm as broke as anyone can possibly be at the moment so a personal trainer is simply not in my budget :(

Brambledoggy profile image
Brambledoggy

How does she know the endo is “mild”? Laparoscopic examination is the only way to assess how much and where and it’s severity. You can have small amounts of endo but be in excruciating pain or lots of endo and hardly have symptoms. I wasn’t aware it could be diagnosed via ultrasound?

theallnewme profile image
theallnewme in reply toBrambledoggy

Because my ultrasound had no titling of the uterus and my ovaries were a normal size apparently? And it can be sometimes depending on whether there's cysts I believe? But honestly I feel like she was talking through her arse

Brambledoggy profile image
Brambledoggy

Hmm. Don’t think so. The only way to diagnose endometriosis is through a thorough laparoscopy, anyone tells you anything different is wrong. IMO.

theallnewme profile image
theallnewme in reply toBrambledoggy

Thank you. I'm glad I'm not the only one who thought this was ridiculous

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