Being Diagnosed/MRI/Mirena Coil?

[gannb92]

Hey all, I'm new to this whole thing so I guess I should start by introducing myself ha. My name's Georgina - I'm 25 and I've recently been diagnosed with endometriosis. I'll admit, I've been extremely lucky considering how long it takes most women to get diagnosed! This time last year I couldn't have even told you what endometriosis was, let alone fathom that I might have it. I never thought that my periods were all that painful, or that what I was feeling was any different to what any other woman felt at that time of the month. For a little over a year now I've had a bit of a "dodgy stomach" and even though I went to the Dr's several times, I was told it was just my diet, or a sensitive digestive system. Now I learn that it is actually a symptom... Go figure. Anyway, I only started having real problems around November last year when I started getting this sharp stabbing pain in my lower left side. It was agony most days, and spread up my side and around my back. On the worst days I could barely stand up straight! I was told it was a water infection, or a kidney stone. When the pain persisted after antibiotics and the CT scan of my kidneys came back clear, I was then sent for a scan. Turns out, it was a highly irritating stubborn cyst that was causing me all this trouble! "No wonder you were in so much pain" They said. The lovely gynae surgeon I saw suspected endometriosis straight away and put me in for a laparoscopic surgery to remove the blasted thing and to check for any endometriosis while they were in there. Unfortunately they discovered that it was a lot more extensive than they first thought, and they had to call the specialist into my op to remove what was "stuck" - the actual word they used, lovely imagery I know - to the back of my womb. So even though I was only technically in pain for a few months due to the cyst, it seems I've actually had this condition for a long time, just simply unaware. I'm now 5 weeks post op and due to have my MRI scan on Sunday to see if it has spread at all, and if so where to. Keeping my fingers crossed for good results! I'm also waiting for an appointment to come through to see the endo specialist to discuss any further treatment. I was advised by the surgeon who removed my cyst to get the mirena coil? Not gonna lie, that doesn't sound pleasant at all haha. Has anyone got this? I'd really appreciate any insight into what it's like.

Anyway, sorry for the extremely long post, I just felt like I wanted to share my short story Any advice on living with this would be greatly appreciated, and I'd love to hear about other's experiences!!!! Thank you for reading xx

[Catness]

Hey Georgina,

In a way it’s really good that you had such a competent surgical team who recognised the symptoms of endo straight away and it seems like you’re in good hands

I had the coil put in during a lap but I only chose to have it as I was having 3 week-long periods (housebound for 1 of those weeks due to how heavy it was) and my periods were excruciating. I also have adenomyosis so this obviously contributed massively to these symptoms. I’m not sure personally if I would of had the coil if I wasn’t already dealing with such debilitating symptoms. However having said that I love the coil it’s been the best decision I’ve ever made and I now have very light periods (although I experience pain daily). I won’t think twice about having a new one put in again once the 5 years are up.

There are many options to try and control/ slow the spread of endo so perhaps if the coil sounds a little daunting you could try and talk to your consultant about whether there are any other options and why they feel that the coil is the best fit?

All the best! Xxx

[gannb92 in reply to Catness]

Thank you so much for your comment!! I do feel really lucky to be surrounded by the team I am definitely. It's good to hear a positive story about the coil, I know they can sometimes be quite troublesome little things. Yeah I plan on going through my options with the specialist first, if the coil seems the best way to go I think I'll give it a try 😊 I'm glad it worked out so well for you!!

[rach890]

Hi Georgina, your story sounds very similar to mine! Ive always had very painful periods but never thought anything of it, I then had one period that was such server pain that I couldn't get off the floor so I ended up in hospital and was told it was a kidney stone! my gp suspected it was endo, I had surgery last year but am still undiagnosed. They found my right ovary stuck to my tube and fossa and adhesions but told me it was a PID which I am still arguing my case that it isn't. I was told to get the Marina coil but like you I'm very wary of it, so it isn't something I have opted for, but I have a few friends that have got it and have said its helped. Thanks Rachael

[gannb92 in reply to rach890]

Hi Rachael! Yeah exactly, I just thought "oh it's supposed to hurt" and kind of never thought about it. Ooh no, I'm sorry you had to go through that! It must be so hard still not getting the diagnosis. Here's hoping they get it sorted soon! I agree, I'm not overly keen on getting the coil, but if it sounds like my best option then I'll pluck up some courage ha! Thank you for commenting and sharing 😊